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!!