Women of Faith Round 2/dr appts

I am leaving in the morning for the Women of Faith conference in Indianapolis. I am so excited and very much looking forward to this weekend.

Most moms can agree with me that you are never really "off". Even in my sleep I am "on". I hear beeps from monitors or feeding pumps. I wake up if she is breathing different. I can hear her paci drop.

It's not a break from Emily that I am needing, I am actually dreading the fact that this will be the first night I have spent away from her.

I need a recharge so that I can be a better mom and a better wife.

Emily is in great hands. Our wonderful nurse, Kathy, will have her Friday until Joe gets off work and then daddy gets to spend the weekend with her. Good thing for her she likes to watch football!

Please pray that it goes well, we have safe travels, and that Emily stays healthy. If anyone remembers what happened last year click here to read.

Emily had a great neuro appt. He is pleased with her progress. I still can't believe the things she is doing!

I finally got some pictures of her and her neuro, Dr. Farber. Don't worry he gave me permission to post these. ;)

We had a time getting a smile out of her.

Finally, a grin!

It really is nice to have a doctor who listens to you and really cares about your child.

We are very thankful to have Dr. Farber in our lives. Wish it were a different reason though.

Emily also had a swallow study done. She is a picky eater. We tried to warn them but they have to add contrast in the liquid and food so that they can see the food going down under the x-ray. They gave her some pink liquid  and she gagged and chocked (new that was going to happen) it was overly sweet and she does not care for overly sweet anything! She aspirated on that which means the liquid went into her airway. They tried a baby food but she would not eat it-told you picky! I did bring one of her favorite jarred food, macaroni and beef. I know, yuck, but she LOVES it! She ate that great and did not aspirate on it.

We tried her regular pediasure and she aspirated on it too.

SO, no liquids at all by mouth for now. Any baby food is allowed and we will repeat the study in 3 months.

Sucks, but not the end of the world. We have work to do. Hopefully as her muscles strengthen so will her swallow.

Love this face!

ACTH update again

Day 27 of ACTH and things are still good.

Her blood pressure has regulated and swelling is still pretty minimal.

The extreme fussiness was helped with the addition of zantac.

She is still not sleeping well. Some days she will sleep great and other days she will sleep just a few hours all day.

Her appetite has calmed down a little. She is still eating 100% by mouth without any supplement of pediasure. We just started giving her stage 3 baby food last week with speech therapy and she did great and so far she has not chocked or gagged on it.

Also last week in speech therapy she had her first Gerber cheese puff and a grape sucker! She loved both especially the sucker.

She was a purple mess when it was over :)

It is crazy to think something as simple as a sucker can be a great therapy tool. We are teaching her to use her tongue more so that one day she will chew her food and that will also help with forming words one day too.

We are noticing a little more eye contact lately. She does seem a little more alert. I just miss her personality so much. Can't wait for the fog of ACTH to be over.

We are still celebrating...18 days no spasms and 12 days not seizures.

Praying everyday that this will continue once she is off the ACTH injections.

Thank you Jesus!!

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.

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

hello food!

Today I gave Emily her first taste of food in over almost 2 months. She was in heaven!

I could not get it in her mouth fast enough.

I honestly did not think she would like it because it was 15 grams of sweet potatoes and 10 grams of canola oil. It looks really gross!

It was not a lot of food either so she was still pretty hungry. Luckily she was tired so she fell asleep shortly afterwards.

I think she may start teething soon. She still does not have one tooth but she is drooling soooo much. I had to take this picture it looks like a drool beard. haha!