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!!

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.

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.

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!



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.