Soooooo

I did not quite make it to the women of faith conference.

I did get to go shopping with the girls at an outlet mall and check into the hotel but that is as far as I got.

Joe took off work to stay with Emily and he called while I was shopping and told me she had been seizing and he had given her just about all the meds he could. I told him to give her the last dose and call the on-call neuro.

So I am sure you can guess the rest of the story. I made it home pretty quickly  and met him in the ER and they admitted her.

IV steroids and Valium did not do a lot to help but we did find out that her labs are off. Because of the zonegran and the ketogenic diet she has metabolic acidosis the short description is-----metabolic acidosis is a condition that occurs when the body produces too much acid or when the kidneys are not removing enough acid from the body. If unchecked, metabolic acidosis leads to acidemia, i.e., blood pH is low (less than 7.35) due to increased production of hydrogen by the body or the inability of the body to form bicarbonate (HCO3-) in the kidney.

We are now taking her off the zonegran, she has been on it for several months and have not seen enough improvement and we added sodium bicarb.

We also are going to retry topamax. The 1st time she tried it she stopped eating and at that point she did not have her g-tube.

On Friday she had over 166 seizures and yesterday she had 83. That is a 50% reduction.

We are also going to adjust her ketogenic diet to allow more protein and see if that helps with some more seizure control.

Joe did such a great job on Friday, checking into the ER with Emily is no small task! I am thankful to have such a hands on husband. I just hate that we feel so confined to home. I was so afraid and nervous to leave and all this did was make those fears worse. So no trips for momma any time soon!

Momma's weekend

I am leaving Friday morning to go with a group of women from my church , along with Emily's nurse Courtney, and we are to the Women of Faith conference. 

I have been several times before and it has always been an amazing experience.

I have to be honest though, this is my very first time to spend the night away from Emily and I am super nervous about it.

Emily's grandma and grandpa (Lonnie and Brenda) will be coming down Friday evening to stay the weekend to help Joe out.

Thankfully since she is still on the ketogenic diet I can make her meals out before I leave so Joe does not have to worry about that.

I know she will be fine with them I just think it is more me that I am worried about. I hate being away from her and since she has been diagnosed with epilepsy I don't think I have spent more than a couple hours away.

Please pray for Emily and that she will have a boring uneventful weekend. Pray for safety for everyone traveling to Indianapolis.

I am looking forward to sleeping straight through the night! I may end up trying to put a paci in someones mouth in the middle of the night though. :)

I am also really looking forward to just spending some time with my Jesus. It can be really hard to focus on Him while I am doing everything else with Emily. I know this is an area I need to work on. This will be a good weekend for everyone.

Also the DME guy is coming out tomorrow so we can pick out a stroller/wheelchair and a shower chair for Emily. It will be an interesting meeting because I do not want the chair he thinks is best for Emily. I do not want a chair that looks like a wheelchair, not yet. She is only one and I know this sounds vain but they have so many other medical strollers that will work.

shhh I am whispering this-no seizures yesterday!!! yay.

Have a great weekend everyone!!!

Better?

So Emily has been sleeping A LOT lately but the past couple days it seems she is much more awake.

Yesterday she was definitely awake more than she has been in a long time.

It was nice to see her not so drugged up.

She has also been babbling a lot more too. She is making new sounds and using her tongue more. She "talks" a lot if we are having a conversation, it's like she knows we are not giving her all of our attention. :)

I don't know what parent would be happy about this next story but I was.

Emily almost (keyword almost) fell off the couch! I know this is wrong to be happy but dang it it means she is getting at least slightly stronger right ? When Emily is laying on her boppy on the couch she uses her stomach muscles to try and pull her self up. More often than not she does not go anywhere but this time I was not right next to her and Courtney (her nurse) took some things to the kitchen. Luckily I saw her and got to her in time. No harm no foul.

Seizure-wise, she is still having them. On the bright side she is not clustering them as much as she used to. Normally when she would start having seizures they would come in clusters of up to 100. It takes a lot of meds and time to stop them. The past couple days though (after med change) I have not had to give her any rescue meds because they are stopping on their own.

Emily is also sleeping SO MUCH better at night. Some night are better than others but over half of the week I am getting at least 6-7 hours of sleep. I am actually having to wake her up for breakfast and therapy some mornings.

It has been super hot here lately so we have just been staying inside, we cannot wait for fall so I can get her outside more!

I will leave you with this picture I took the other day. She fell asleep for a nap so sweetly I had to take it!

Just here

Emily has been doing good that past couple days. Minimal seizures, no extra rescue meds and spasms are pretty low too. That is all good!

She is super sleepy though which is not good.  She sleeps through most, if not all, of her therapy which does little to nothing for her. It gives me an hour to talk with an adult (which is nice by the way) but for Emily all it does is stretch her and she has such low tone I am not sure she really even needs that.

We changed meds a couple times and I am working on her diet. She is still on the ketogenic diet but now she is on all food. What she does not eat I just put down her tube. It is much quicker than giving her 6 ounces of formula over an hour and she is not gassy at all either! I am learning things that seem to help, for instance it seems when she has a meal with higher protein she does not have as many seizures. So I have been trying to give her more of those meals the past two days. Seems to work, who knows with Emily though.

When she is awake she is pretty happy. We are still getting some smiles and occasionally some laughs out of her.

Joe's grandma and grandpa came in for a visit last weekend. Joe adores his grandparents and he tells me so many wonderful stories about her grandpa. They are such sweet people.  They only stayed for a couple hours to visit with us and Joe's mom, step-dad, brother and sister. It was nice having family visiting. Emily of course slept the whole thing but we got some great pictures.

 He has the best smile!

4 generations.

"friends"

We all have them, if you have facebook then you have even more of them... I am talking about "friends". They are more like acquaintances really.

I had to un-friend someone yesterday. The person, on more than one occasion, has put on their status jokes about people with special needs. I usually just try to let it go and not get to me. Usually...

Last night was different. I saw their status and I tried REALLY hard to let it go but I just could not do it this time.

I had listened to a song that morning and one of the lines were "when I was weak, unable to speak..." and that line was stuck in my head and I looked at Emily and thought I have to say something. He has to know this is wrong and not ok.

I told him in the kindest way I could how I felt and fully expected an apology put instead I got the opposite. Without going into all  the details I will just say I am now one less friend on facebook. My heartfelt words just bounced off of him and unfortunately I feel this will not change him at all.

What hurts me the most is I know this will not be the only "friend" in life I will loose because I choose to defend my daughter who has special needs and not conform to a simple minded community who thinks it is funny to mock children with disabilities.

I am going to pray for this person and hope that his heart is softened and he will see what I was trying to say. I also pray these very same people NEVER have to fight wars such as these for their children.

We fight for so much for our kids from insurance coverage, nursing hours, medications, therapies, to the best schools for them. The last thing we should have to fight for is acceptance.

I am not perfect, nor will I ever claim to be. I am passionate though. Very passionate about my daughter and I will stop at nothing to give her the best life possible.

Oh and to update you on Emily. She has only had one seizure in the last 2 days and she is fully on food now. If she is awake she will eat at least some of the food and once or twice per day she will eat her whole meal. We have had lot of smile and laughing too!

She makes it all worth it.

Lately

It has been a pretty eventful week or so.

Emily's seizures were still pretty frequent after her last hospital stay so Last Monday I called her neurologist to talk about what is next and we decided to bring her in to do a couple days of IV steroids. In the past it has always worked very good for her.

It seemed that they got worse this time. We made a few med changes and sped up the process of switching her to food from formula. She is still on the ketogenic diet I just make her meals now instead of the ketocal formula. Personally i think that has made a difference. She is not nearly as gassy and hardly spits up at all.

She is eating at least a portion of each meal and what she does not eat I just put down her tube.

We finally have stopped her clonazepam and as of Monday she will be off her lamictal too. I never saw any side effects of the lamictal but we also never saw an improvement.

Stopping the clonezepam has been such a blessing though! Emily is so much more alert and you can see in her eyes that she is seeing more too!

On Saturday while I was sleeping Joe got a video with his cell phone of Emily laughing. It is the most awesome thing ever! She has not laughed (awake) in so so long! Joe said that he opened his pop can and she cracked up so he snapped his fingers and she laughed again. He then coughed and she was laughing so hard all she could do was squeal! She has done this two nights in a row now. I got a video but it is too long. I will work on getting a shorter one to upload.

She is also resting so much better. She is sleeping at least part of the night since we got home and just seems much more rested when she wakes up.

Since leaving the hospital her seizures have gone down to 5-10 per day plus her spasms. They are super short too.

It was a long hospital stay and it always sucks but since Emily has been in so many times we have really gotten to know a lot of the staff and it is nice to have friends while we are there. People that set down and pray with us and for her or just set down and talk. There are a couple of night shift nurses we have grown to love, Alisha and Stephanie kept me company many nights and I am thankful they love Emily and take such good care of her. There are so many people there that love her!

I had a couple rough days in the hospital watching my baby seize over and over for hours on end. Over the last week I have had a couple of wonderful emails from parents who understand, I know I am not alone in these emotions.

On a completely different note...

I was thinking about my post a little while back where I was just honest and raw with my emotions. While I am terribly sad that people have chosen to remove themselves from our lives I am much more sad for them. They are missing the opportunity to get to know an amazing little girl. Emily is such a blessing and to see her smile and laugh brings such joy to my heart.

Thank you all so much for the prayers

Another hospital visit

So Emily made it back to the hospital...again.

This time for some IV steroids. Her seizures have been relentless and we just can't seem to stop them. When we do it is not for very long.

So lots of tylenol (in case it is teething) and a couple med changes we are hoping to do the trick.

It has been a rough couple of days. We NEED to get these seizures to stop.

We are supposed to go home in the morning so I will try and do a better job at updating everyone then.

Thanks for all the prayers!!