Saturday, December 18, 2010

sweet overload

"True friendship is seen through the heart, not through the eyes."




My best friend, Angie, had a little girl, Ava, 3 months after I had Emily. Angie and I were so happy to find out that we would be having little girls so close in age. I saw them going to kindergarten, prom, and graduation together. They still may do those things just in a different way. I still have all of those dreams for Emily they are just different now.

I am so thankful to have Angie, I honestly don't know what I would do without her. She can finish my sentences and tell what I am saying just with a look.
I am also very thankful that Emily will grow up with Ava. I know her and Emily are very different but I am just so excited to see what they will be able to teach each other.
Emily will teach tolerance, kindness and acceptance. She will watch Ava doing things she can't yet and I pray that she will learn from her.



Everyone needs that friend who can finish your sentence or just squeeze your neck :)



Ava was so sweet with Emily. She held her and kept hugging her neck and kissing her cheek.

They are growing up so fast!

Friday, December 17, 2010

stuff and more good things

I love stuff.
 By stuff I mean things people use for therapy, positioning, seating, toys etc etc....

Insurance pays for a very selected amount of "stuff" each year and most of that you have to fight for. If you chose to buy said "stuff" out of pocket and it is labeled for therapy, special needs, or medical it will be incredibly expensive!
So we try to find things that can be turned into therapy use.

Right now Emily's vision is taking off so we are trying to stimulate her in different ways. It seems that she loves lights a lot so after some thinking what we can do.......
viola!!!!
Turn your baby activity gym into a light show!

She even grabbed the lights!




Here is a couple of pics from yesterday when she was holding her head up. She did this for 3 minutes straight!!!!!!!


 
I am so proud of my little girl!!

What kind of "stuff" do you use to make therapy creative?

Thursday, December 16, 2010

good stuff

Hard to see but Emily is pushing up through her arms and holding her head up!!

Tuesday, December 14, 2010

18 month check up

Emily had her 18 month check up today.
She is almost 21 lbs now! Her head, height and weight are all small, on the charts though and proportionate.

We were very frustrated this time because we had to wait 1 1/2 hours for a scheduled well baby check up. She is not getting vaccines right now so all the doctor needed to do is check most orifices-all were clear. I don't think she even looked at Joe or myself once. She never once asked how Emily was doing or if she was doing anything new since her 12 month check up. She never asked if Joe and I were doing ok or if we needed anything.

She was rude and angry that her nurse was not there to write her prescriptions and notes.
The reason we have stayed as long as we have is because of the awesome nurse case manager. Thankfully we don't see the pediatrician often.

It just makes me so sad to see a doctor who is doing their job because she has to do it, not because she loves to do it. You know a doctor who does it because he loves to do it when you see one.

Emily has had much better head control lately. She still has far to come but her PT thinks we may have her setting up within the next 6 months! I can't wait to see my baby setting!!!
She has two teeth on the bottom and one on top is getting ready to break through.
We know that teething is a seizure trigger for her and because we keep a daily journal on all of her seizure activity we can see trends.

Teeth!

The good thing is 3 months ago when Emily would have bad days she would have over 200+ seizures on top of her spasms. The past month or so during her bad days she is only having 20-30 seizures! That is a huge improvement! The only change we have made is wean her topamax.
Every time we decrease a med we see improvement. She gets her last dose of topamax on New Years Eve. We will be bringing in the new year one less med!!!

She loves the computer!
Another good thing is we finally got speech therapy approved and found a ST in our area to take her case! I am told she is the best and is very hard to get.
We have dropped her occupational therapist for now. The therapist told us that we over-medicate Emily and that every blink of the eye we see seizures (prob because we do!!) we spoil Emily, the list goes on and on. This was a fight I did not have the energy to fight and in our little country town there are not any other OTs right now. So she is getting PT twice per week, Speech once per week, and vision once per month.
Really into something!
Oh I almost forgot! I don't want to say this very loud but she has been sleeping 6-7 hours at night! Normal people sleeping time!! WOO HOO!!


Friday, December 3, 2010

1st Anniversary

Our appointment was for 6:30 pm. We arrived a little early. Our names were called. We laid our healthy 6 month old little girl on the exam table, the pediatrician walked in-that ladies and gentlemen is when our world crashed to a screeching halt.

One year ago today Emily was diagnosed with infantile spasms.
Our pediatrician was young, newly graduated. As soon as he saw Emily he new immediately what was going on with her.

He walked out of the room, called an ambulance and came back with the nurses to help.
They all looked at us with sad, tear filled eyes. They new the diagnosis. They new the long, hard, painful road we were just thrusted upon.
I did not understand....yet.

We sat in the ER for what seemed like forever.

We had so many different doctors come look at Emily. They all wanted to see "what she did".
They all had the same sadness in their eyes.
Before the night was over we saw over 15 different med students, residents, and attending physicians.
We were overwhelmed.

The next day our neurologist sat down and began to explain the diagnosis. I almost laughed! Infantile spasms, ha! That does not sound bad, but why does he look so sad?
After he left, I must admit, I was mad. I did not know who to be mad at so I was mad at him. The man who diagnosed my little girl with such a horrible thing.
I could not even bare to look at this man when he came back in. I needed a face to this diagnosis and he got it. I blamed him!
I quickly realized that was just my way a dealing with such pain.
Today, I could not be more thankful for Emily's neurologist.
I know he wants Emily to have the best life that we can possible give her. He has been patient with me and understanding especially in the beginning when we rushed Emily into the ER every time something new came up. He knew that we were scared. Every time we called the on-call doctor at 3am we were really scared and he would calmly say "bring her in I will be there in the morning". He could have been upset and frustrated with us and gotten sick and tired of me calling all of the time.
Instead he gave me his cell phone number.
Thank you Dr. F.

This past year I have learned a lot.
No one will ever understand what we go through on daily basis unless they actually do go through this on a daily basis.
I am much stronger that I ever gave myself credit for.
Some days I am not strong at all. I just get by and that is OK.
Some people are not strong enough to handle the person I have become. That is OK, too.
I need and love my husband more than I ever thought I could.
It is OK to admit when I need help. It has been very humbling.
Help does not always come from the places you expected it.
Support groups have been very helpful. They get it.
Isolation and loneliness are terrifying.
Crying helps.
Emily's smile make my day.
Emily's milestones may be few and far between but that just gives me longer to enjoy each one.
I get mad and yell and scream why to God. He is big enough to handle it. He also forgives me.
As much as I love Emily God loves her more. I can't fathom that.
I do not understand why Emily suffers, why we suffer. I probably never will.
God is the same God that he was before Emily was diagnosed. He has not changed, we have.
Joe and Emily complete me.
Emily is perfect.

Sunday, November 28, 2010

Lights


Emily helped us put the lights on the Christmas tree but someone just wanted to play in them.







more updates

Two posts in one day!! AHHH!

Emily is doing much better the past few days. She is finally over the uti and her first TWO teeth have broken through. I thought this girl would never have teeth. She now has two bottom teeth that came one right after the other.
She is still having clusters of spasms and a few seizures daily. The past few days her seizures have been down to 3 or fewer.

So now we know that a uti and teething are seizure triggers for Emily. Now we are dealing with biting. Fun.

Visually, Emily is really progressing. She is seeing so much better and is tracking and following more objects. Used to you would have to introduce something to her from the side and hope it would catch her attention but now we can start closer to mid line.


Another big thing is she is interested in the TV! She does not care for therapy so her PT suggested we turn on cartoons, I laughed to myself because she has never been interested in cartoons before, well she proved me wrong! She loved it and we got through PT without any major melt downs!

A friend gave us some DVDs to try and she loves them!
Here are a couple pics of her watching TV.


She really likes baby Einstein.

Emily and her daddy watching videos on the computer.

I want to get her an ipad so badly. I know she would love it!




We are weaning her topamax slowly and when she is off of that she will only be on phenobarb. We are defiantly seeing more of Emily since we began weaning meds. She is pretty happy but she is very opinionated if she does not like something. Especially when she is tired.

She finally broke the 20 pound mark! She has always been on the small side and now that she is on the ketogenic diet she does not gain weight very quickly. She is small but proportionate.

We did get Emily's bath chair. We decided to go with the Rifton Blue wave bath chair with a tub stand to make it taller when we need it. Emily seems to enjoy it and it supports her so much better.

All of the support straps are movable. We don't use the chest and leg straps because she does not move enough to use them yet. She loves kicking her legs in the water.

We also got her stroller. We decided to go with the Special tomato EIO. I don't have a great picture of it yet. There are many reason we chose it. It holds up to 90lbs and it reclines all the way back so she can sleep. We also got the special tomato soft touch liners to support her better and they can also be removed and used in a chair for more support later.
So far I am very pleased with it. I wish it had a bigger basket under the chair to hold her diaper bag. We carry so much stuff when we go anywhere.

So that is pretty much it. Oh and I turned 30.

Looking forward to some more good days.

Christmas cards

I hope everyone had a great Thanksgiving! We sure did.

We stopped by for a little bit and visited my mom, sister, sister's bf, and brothers. Next up was Joe's mom and step dads.

Emily tolerated it well, she shut down but no seizures or fussing. Joe has been off for a few days from work and it has been nice spending time together and SLEEPING. I am so thankful he is such a hands on daddy.
Tomorrow we are decorating for Christmas. I love this time of year. The smells, lights, snow I love it all!
I also love cards! Just ask my husband, I love cards for any occasion.
Last year we did not send out any Christmas cards because Emily had just been diagnosed with infantile spasms. The months of December and January were a blur.

Do you all like to send regular cards or photo cards?
This year were are sending photo cards because we just had some amazing pictures done.

I have been looking through Shufferfly's extensive list of Christmas photo cards and I can't decide on one.
I like this one because I want to have more than one photo on the card and you can save the pictures!

I like this one too because you can fill you friends and family in on your year.

There are so many to choose from!

If you would like to try them out and you have a blog go here and follow the directions and you can get 50 free photo cards too!
I can't wait.
Be on the look out to see which one we choose.

Monday, November 15, 2010

Good days

We have had several good days now. I think we are at 5 or 6 really good days! Thank you Jesus!
By good I mean little to no seizures, minimal spasms (but still there) she is alert, responsive, visually tracking us and toys and babbling like crazy!

She has been such a joy the last week! I don't think she has really cried much either. She is sleeping at least 5-6 hours at night. Most nights she does not go to sleep until 12:30 or 1am but I will take it!

Previous to our really good week she had probably some of her worst weeks, hence the no blogging.
She was seizing like crazy no matter how much meds we gave her. You could tell she was just so out of it and "off". Long story short-low grade temp, strong smelling urine, extremely fussy and increased seizures= massive urinary tract infection (e coli to be specific) Things got worse once we started the antibiotics and I was so nervous because she has never needed them before so I did not know how she would react. Just a couple days in and she was doing SO much better.

We noticed the weather forecast was calling for mid to upper 70's last Friday and Joe and I really wanted to get some family/18 months/Christmas picture taken so we asked our good friend Rebecca to take them for us. Also Joe's dad, step-mom (Brenda) and his grandma Mae were coming in that week too so that was a bonus. They were originally coming next week to celebrate Thanksgiving but Brenda and Lonnie are going to be grandparents again and they were cutting it close to the due date. Can't wait to meet Ava!

We got some great pictures! Rebecca is so talented and I am so thankful to have these pictures to look back on. I don't think she understood how grateful we are! To capture such great pictures on a beautiful day and one that Emily was feeling great, we will always have these to look at on bad days to remind us that it is not always going to be bad. Thanks again aunt Bec!! You can follow her here on facebook.

So I will leave you with a few of the pics! Have a blessed week!




One of my favorites!

This color was amazing!




She amazes me!


Saturday, November 6, 2010

off

I don't really want to blog right now but I am making myself.

Things have not been good lately.

Emily's seizures have picked up in spite of everything we are doing.

She has what we think are seizure-free days once or twice every week to two weeks but I am not sure that they are really seizure free.

The past few days have gotten really bad.  She is having so many seizures and we are giving her a lot of meds to TRY and slow them down but they are not working well anymore.

She is weaker than she has ever been and has not been herself in a few days.
She is twitchy and very seizurey looking.

We took her to the ped yesterday just to check labs and urine to make sure it's not something simple like an infection or off labs we are dealing with but they were normal.

I really don't want to go the hospital (especially during cold and flu season) we have oxygen and and a monitor at home and we have been using it lately. She has only needed oxygen once but we are thankful we had it.

We are taking her in to see the neuro the beginning of next week and hopefully we can figure something out.

I want my happy smiling baby back.

Tuesday, October 26, 2010

slacker

I am a blog slacker! I admit it.

I, sometimes, just get tired of saying the same things..seizures, seizures, seizures....

So since her last hospital admit Emily has been ok. Seizures daily but they are manageable.

We got her home oxygen and oxygen saturation monitor delivered last week. Getting those, hopefully, will keep her out of the hospital more during cold and flu season. The main reason she goes in the hospital is because we have to give her so much medicine to stop her seizures she gets sedated and needs to be monitored. This way we can throw the monitor on her and feel more confident about staying home and avoid a chance at her getting sick from germs in the hospital.

I am not holding my breath but she is SUPPOSED to get shower chair and new medical stroller today. Once I get them I will post pics.

Right now it has been 2 1/2 days since her last seizure. She is still having spasms this whole time but no seizures that I have seen. She even slept last night from 10:30PM-4AM.

We did get to go to church on Sunday. I was nervous because we, along with two other men, we asked to speak on the topic of suffering. So, yea that was hard. In the end I felt good about letting my church family know how we feel. We feel so blessed to have them care so much about us!!
This was also the first time I have let anyone watch Emily at church. During first service my friend, Angie, just set in service and held her so I could see her the whole time. During 2nd service she took her down stairs and said if she needed me she would send someone up to get me. About half way through someone stuck their head in and motioned me to come. When I got down there she was crying so hard and as soon as I took her she stopped. We have been having some separation anxiety issues lately especially when she wants comforted. I hate that others have so much trouble calming her down BUT it is a normal 17 month old behavior :)
I was afraid Emily would just shut down but she did very well with all the sounds and one of our friends, Chasity, even got her to smile. That is a pretty big deal because normally she will only smile for us.
Later that evening we had a visit from Emily's great-aunt Shirley and Emily really enjoyed being loved on and started to fall asleep in her arms without her paci! Emily loves her paci :)
It was a fun but busy day and I am so proud of Emily, she was such a good girl!

She had her cardiology appt yesterday and it went well. She still has a "very tiny" pvo (hole) in her heart but he feels it will be just fine on its own. She also has an innocent murmur because she has false tendons, he described them as like "pumpkin guts" and when the blood flows over them you hear an extra sound. He is actually the only one to ever hear it. So we don't have to go back and see him for 1-2 years!

Yesterday I changed Emily's g-tube! I know this sounds silly but I was very nervous and I made sure Emily's nurse was here but I did it all myself so that I would feel comfortable in the future. I piece of the tab you use to open it broke off, it was still usable but it would have to be changed soon anyway.  It was easy and now I don't worry if I have to do it again.

Sorry for the lack of picture, I need to download them from my camera. I promise more next blog, whenever that will be :)

Thursday, October 14, 2010

Infantile spasms awareness week

As I set here feeding my 16 month old daughter through her g-tube, I am aware.

This is infantile spasms awareness week. It is sponsored by the company ,Questor, who manufactures the steroid injection ACTH (acthar gel). The same company who makes almost $30,000 per vial (we used 3!) eye roll
This is what she looked like on the ACTH.



Anyway....
No other company or organization is doing anything to bring awareness. I had planned on this week doing several blogs, posting videos and stats but Emily ended up back in the hospital again on Monday night. So I have not had the time to do it all.

It was the quickest stay yet. She was admitted around 11pm and we were home by 3pm Tuesday.

She had been doing really well, Saturday and Sunday she had no seizures and then Monday morning it all changed. Her spasms are usually an indicator of how her seizures will be. Less and more mild spasms usually equals little to no seizures and when she has frequent, harder spasms her seizures are crazy.
She woke up to a lot more spasms and the clusters were lasting pretty long too.

Just as predicted she started seizing just a couple hours after waking up and they "seemed" to be under control. Never trust a seizure! :)
Joe got sent home early from work so we laid down and were napping when Emily's nurse hollered for us. We ran out to the living room and she said she had a new scary seizure.
She described it and right on cue Emily did it again. It was a tonic-clonic (grand mal) but she was screaming with it. They were not long but she quickly began clustering them. I gave diastat and called neuro gave some more meds.....they were not stopping. It was only sedating her and my biggest fear is aspiration. Once she could not clear her throat I get nervous.
There was really no changes made this time, they just monitored her and gave some IV ativan.
Today she has only had 1 seizure.

Were are working on getting an oxygen monitor for home so that we can avoid hospitalizations like this one. If we can monitor her oxygen at home when she is that sedated hopefully we can stay out of the hospital during cold and flu season.

I am aware, aware that infantile spasms is scary, destructive, and life altering.
Before the diagnosis
 After the diagnosis

We have had to make choices no parent should.  We have sacrificed a lot and will sacrifice more. We have gone days without sleep, food or showers. We lost half of our income when I quit work to take care of Emily. I have lost relationships with people who in most families are their greatest support system. People just don't knock down your door to visit, we don't have must else to talk about these days other than Emily and everything that revolves around taking care of her.

Dec. 3 2009 was probably the worst day. When I heard the diagnosis of IS I felt relieved. A name like that CAN'T be that bad, right? Then I saw the sadness in the neurologist eyes, he knew how hard this road was going to be. I am so thankful we have such a great neurology team. Our neurologist is kind and helps with whatever we need. I am pretty sure Emily is his favorite patient (wink wink) :) The whole office is always very helpful and most of them know us well. When we are in the hospital the nurses know us well and take great care of us.  We have a great relationship with the neurology nurse practitioner and Emily's dietitian also. While I wished with every ounce of my being that we did not have to have those people in our lives, I am thankful that we do have those people who take such great care of her.

I pray one day we can find a cure for IS and epilepsy in general. I have many friends I have met through blogs, forums and facebook and watching so many kids suffer daily from seizures and spasms is devastating. Since last Dec, I have seen 5 kids pass away from epilepsy, we NEED a cure!

Sunday, October 10, 2010

general update all things Emily

I just thought I would update everyone on Emily in general.
I talk about her seizures more than anything and it gets easy not to talk about the other things she has going on.

Lets get the seizures out of the way first.

She went 7 days with no seizures and had a 50% reduction in spasms. On the 7th day her spasms increased and she began to seize again. This time it only lasted 3 days and only 2 of those days required minimal extra meds to control them. Right now she is at almost 36 hours with no seizures and her spasms are super short and very weak and are down about 50% from what she normally does.
We changed one of her her fat sources on the ketogentic diet from canola oil to butter and we have seen an improvement with seizures. Don't know if it is just a coincidence or not but I will take it!

Developmentally she is right around a 4 month age level. I look back at video of her at 4 months old and she is doing things all over again. She is moving so much while she is laying down. She wants to badly to set up and I think she will get there soon! Her head control is getting pretty consistent, it of course is weak when she is tired but she is doing really well with it.
Emily has always been a clingy baby but lately it has gotten worse. She knows who she wants and will let you know if it is not you. Sometimes she only wants me and other times she just wants her daddy.

She has never liked any type of seat. She hates everything we have tried so she sets on the couch with us a lot on her boppy with a pillow under it to set her up but the last couple of weeks she just gets fussy and won't take her passy and it gets hard to hold her all of the time. One day when she was not happy I just set her up on the couch next to me and she was happy as a lark! Now that is all she wants to do. I think it is great because she is tolerating setting up and it is making her core stronger.

Her vision is getting so much better as well! Before I would have to say something to get her attention but now I can just walk in the room and she smiles because she sees me and recognizes my face. This makes me very happy. I have noticed her looking at the computer and the ceiling fan most recently too.

She still does not have teeth. At her most recent ped appt she said not to worry about it until she is 18 months old (she is 16 now) and then she would get x-rays. We have seen her teeth on an MRI before so I know they are there, just don't know why the won't break through.
She has no desire to eat ANYTHING. I try but she acts like I am feeding her acid. She especially dislikes water. She always has. Thank goodness for a g-tube. :)

We still have a long way to go with her sensory issues. She completely shuts down when we go out. Her pediatrician does not know her well, thankfully we don't go often, so last week she looked at Emily, who just got finished crying her self to sleep, and she asked if she looks at things or me. I am sure she did not believe me when I told her everything she is doing but I can't make her like going out and I can't make her tolerate a million sounds and smells at one time. We are working on it.

Last but not least...sleep.
Clearly there has not been an improvement (hence the blog at 4AM)
When she we seizure-free for 7 days I was beginning to get her on a better schedule but one seizure can ruin all of my work. Right now she is laying next to me kicking her legs and "talking" to me. I am giving daddy a couple more hours and then I am going to bed.

I could go on for days but I will stop.

I have another blog to post tomorrow. We have a friend ,Christy, who is doing a small fundraiser for us. It is more for locals but I will tell everyone the details tomorrow.

Monday, October 4, 2010

lot of bad, little bit of good

Since my last post Emily has had some pretty bad days.
Her seizures just went nuts.  We made it through that rough patch with only one phone call to neurology, no hospital visits this time. We did get very close one night though.

I have had a very hard time ,emotionally, lately. I can handle having a child with disabilities, special needs, developmentally delayed-whatever you like to call it. I can not handle that fact that I have a child with very serious medical needs. It is hard knowing that her life if so fragile. Every attempt to stop or even slow seizures have failed and we all know that 100-200 seizures per day plus her 10+ clusters of spasms she still has daily is not good for her.
I have mentioned before besides our nurse who works 4 days/week we have no one that can help us take care of Emily. There is not one single person who can care for her if something, God forbid, happens to Joe or myself. I know that sounds morbid but that is something we have to think about. Don't get me wrong, we have a couple family members and some church members that have and continue to help us out financially and bring us delicious meals or bring over groceries. We are incredibly thankful for all of the assistance we get! We love getting cards in the mail or phone calls to check on us. Those things we truly appreciate!
Some days, especially bad seizure days, it is hard to deal with all of our daily responsibilities on top of everything with Emily. Dishes don't do themselves and the laundry just does not jump into the washer just because we are having a bad day. Life must go on.
So now that we are done with the bad stuff and complaining.... on to the good!

Emily has not had a seizure since Thursday at 2am. When she has seizure free days she does so much better with holding her head up and assisted setting.
She had her 15 month check up (it was actually 16 months though) and her head, height and weight at all way under normal but proportionate. The only thing we are watching right now is her hips. Emily legs tend to fall to the right when she is laying flat and she is going to be prone to dislocation so we have to try to keep her hips rotated to the left more.

Trying really hard to set up

Giving her PT the "get off off me" look.



Holding her head up so much better




Emily loves her sensory cat!! It has 3lbs of rice in it to help with her sensory issues.

Thank you Colin for the wonderful gift!!

She loves it!

Praying that this seizure-free streak will continue!!


Friday, September 24, 2010

love

It has been pretty rough around here the past few days. Emily is seizing a lot in spite of lots of rescue meds.

There has been no changes at all with meds or her diet. She is still on the ketogenic diet and I have limited her food choices to help control it as much as possible.
We check her blood sugar and ketones and they are the same as they have been for weeks. I just don't get it.
There is a list of things you think through when her seizures flair up. Is she sick (cold, temp, runny nose), teething, rash, infection, pain, constipation, diarrhea I drive myself nuts trying to figure it out. By the way she has none of those.

The crazy thing is she will have a huge seizure and then look at me and smile. It is like she is reassuring me.

The other night Joe was saying goodnight to her and she just smiled and stared at him. She adores her daddy.




This is what I woke up to yesterday morning. This is after a horrible night of seizures too. She woke up so happy.


She is amazing.