New med update

What a difference a week makes.

This time last week was bad. Non stop seizures, tons of meds, no sleep for me kinda bad.

This past week has been much better, thankfully!

On Monday we upped her clobazam to 5mg in the morning and night. Adding that night dose has made such an improvement with her seizures.

Before clobazam she was having a bad day, recovery day, good day and then start over. All week. A horrible cycle.

This past week she has had one bad day and it was not "that" bad.

She seems more alert and interactive. It really makes me wonder if she wasn't having more seizures that we did not see that was keeping her in a fog.

Little things like making a face at her gets a smile out of her (That means she is seeing more) I was bouncing her in the bed and she was giggling(used to she would crack a smile at best) Her appetite is tremendous! We are watching her calories close to she dose not gain too much weight.

She is also much more vocal! The funny sound she is making melts my heart. :)

She is also developing some new reflexes. Her OT is pretty excited about these. I need to do more research on them to understand better but from what she said it's a good thing!

Oh, and she did this too ;)

Joe was not holding her he was just on stand by in case she tipped over. She held 4 point for about 15 seconds. This is BIG! We have been working on her arm strength for a while and I think it's starting to show!

Kind of a big deal!

Emily literally just began to bear weight on her legs this past week.

We do lots of practicing with it.

So tonight I stood her up and tada....she took a few steps towards me!!!!!

I yelled for Joe to grab the camera and we did it again.

She is so amazing!!!!



Just proud

I feel like a lot of the time when we talk about or describe our children we tell what they can't do or what is "wrong" with them.

The list can be very long and extensive.

We tell how much they can't do physically.

We tell the words they have not said or the toys they can't yet play with.

Right now I just want to share the awesome, amazing, she-makes-me-so-freaking-proud-to-be-her-mom things that Emily CAN do!

Emily can lay on her belly and lift her head up off the floor long enough to turn it from side to side.

When we are holding her she automatically puts her arm around you holding on.

She can now stretch her left leg (the one that was out of socket) completely straight on her own without pain!

She can activate several toys.

Today she squeezed a ball with both hands during OT.

She can say mom and addy (daddy).

When you say show me your teeth she says ahhhhhhh :)

She can get her fingers in her mouth.

She can hold her hands mid line!

Emily can roll to her side from her back.

She mimics you if you make a sound she will grunt back.

If you do something she likes and ask her if she wants to do it again she grunts.

If you are in the kitchen cooking or she hears the microwave she starts smacking her lips and says ummmm.

She is eating most of 3 meals by mouth.

She smiles all the time.

She is the happiest kid I have ever seen!

She makes me want to be a better mom.

To some people her accoplishments may not be big but to me they are huge!

I am just so proud.

Creative therapy

I bought a small child's stool at Target for $2.50.

Covered it with a thick blanket and tada, a cheap therapy tool!

It serves multiple use. Makes Emily hold her own head up, in turn will strengthen her neck and head control

It makes her bear weight through her arms and knees and engages those joints so that hopefully she will learn to use those joints appropriately one day.

She wants to keep her fists closed so I have to keep opening them and showing her that she can keep her hands open while do this.

Yay, open hands!

She really enjoyed this! When I took her off she fussed so I let her do it again for a little bit, such a go getter :)

She is showing off now!

Emily is on a roll with new things!!

Today we tried her thinkbaby sippy cup.

I guess today was her day because she drank 2 whole ounces!!!

That is so much for her!!

Normally she will only drink about 10cc (a couple tablespoons) from the sippy cup.

I guess now that her teething hematoma was popped she feels better :)

There is not stopping her now.

More great things!

Emily's OT left this toy for Emily to play with this week. We decided to try it out after dinner last night, so excuse the messy face. When you have a good thing going you do not stop to clean up ;).

She gets so proud of herself when she pushes the flowers.

By the way, I am not moving the flowers to her hands, she is doing it all by her self.

The next video is awesome because you can see she opens her hand all the way before pushing the flower.

This is another big deal! I am so stinking proud of my girl!



Good Stuff

This is a big deal people!

Emily drank about 10cc from a sippy cup today!!!

We found a cup she will drink from!

You can go here if you want to check out the cup.



So proud of her!

Take a guess!

Guess what Emily did today!!

You guessed yet.....

Well, she drank TWO ounces of pediasure from a sippy cup!!!!!!!

It was not perfect and it was over an hour or so but she did not choke or push the sippy cup away.

She drank 1 ounce yesterday but today I think she realized a little bit more what she was doing.

SO proud of my girl!

just cuteness

Things are still going well. I am amazed everyday at how well Emily has adjusted to her cast.

It is almost as if since she does not have to worry about moving her legs she can concentrate on her arms and vision more.

She is tracking and following our voices much more consistently.

She is addicted to Mickey Mouse Clubhouse! I can turn on cartoons and she passively watches but if we turn on Mickey she lights up!!



I know she is sporting some crazy hair. We just washed it and it dried that way lol!





She fell asleep waiting on me to change her :)





We lovingly call her our puppy. She is always licking!





Can you tell she is teething!?





She fell asleep with her mouth wide open, chewing on her pillow.





See, there's Mickey!





Watching Mickey

I can't believe we are almost 2 weeks into the casting already. Glad it's going by fast!





My Montage 5/13/11 at OneTrueMedia.com

Emily is starting to use her hands more!

Make an on-line slide show at www.OneTrueMedia.com

adapting

We are slowly figuring things out.

Emily is not in much pain during the day, mostly just at night. When she is uncomfortable it is eased with a minimum dose of Tylenol or Valium.

I am going to post the things that work and don't work while she is in the spica. I am so thankful to have found a few parents who have already gone through this. Jenny over at http://colofisch.blogspot.com/ has been so helpful! Her little girl Cici has had to have a spica and is going though it again soon.

Our hardest thing is to figure out how to get Emily setting up straight enough to eat without chocking. So for now she is only eating a few bites per day and the rest is going down her tube. She is not really interested right now for some reason too.

The way her legs bent she can not set in a chair or on the couch.

We are working with her therapist to try and figure something out.



Here we are using her boppy, a pillow under that to elevate her, a tummy time pillow behind her back to take the pressure off her cast on her back and a total pillow to support her head.



She loves to be outside. Emily's grandma and grandpa Johnson bought her a nice wagon for Christmas but it is not wide enough for Emily to use right now. She will be able to use that wagon once she is out of her cast.

For now we are using one a friend gave us.

We used a wedge pillow for her to lay on and a memory foam pillow under her bottom to keep her up.

It was warm that day so we did not get so stay out long but she liked it.

We got this inflatable shampoo basin from amazon. It is large for her but it worked well. She did not care for it but she got over it quickly.

I love this face that she makes!

She instantly started reaching up and grabbing the lights and toys. After this pic I added some more toys for her to play with. I am trying to get a video together when she was playing with this. She was talking and what we call singing. It was so cute!

She is really moving her arms so much more since she can't move her legs.

We are really going to kick up therapy the next few months and hopefully when the cast comes off she will retain what she learned!

another first

I had this grand vision of the first time Emily got to swing on the swings. It know to most it sounds like a silly vision. To me it was a big deal because Emily is very limited physically. She is about a 3-6 month age range developmentally.

She got a huggabebe for Christmas and it is just perfect for her in one of the bucket swings.

Joe and I had this planned and Emily was in a great mood!

We found a local park and to my excitement no one was at the swings. Emily tends to shut down it there is too much noise and by shut down I mean fall asleep.

We get everything ready, put her in her huggabebe, stick her in the swing, and then instantly this......

She HATED it!!! Every single second.

We will try again sometime in the fall. She will be in a cast for 3 month next week so maybe after some time she will enjoy it :), we'll see.

My girl would just rather I hold her and snuggle at the park then swing. That is ok. She is only little for a while.

We are just so proud of her. She is doing new stuff everyday! Just yesterday she held her arms up when I unbuckled her car seat (she knew she wanted me to pick her up!!)

She is holding her trunk better and better everyday.

When we hold her she does not just lay her head down on our shoulders, she holds her own head up when she is not tired.

I could go on and on about the inch stones she is making.

Emily may not have many milestones, some days they will be inchstones, centimeterstones, or even millimeterstones but heck they are something!!

I just love her so and I am so thankful I get to watch her grow up, no matter how far she may get.

Still abnormal BUT........

Emily had her 1st post ACTH eeg. It was sleep deprived so that we could catch her falling asleep and then waking up.



Slap happy from keeping her up until midnight!



Love this smile!

She did great! She was not a happy camper when I woke her up at 4am (neither was I).

They hooked her up to the eeg and we wait. I am horrible about staring at the eeg reading the whole time. I can't read them but I can sort of tell the really bad stuff (I did not see that).

Normally you wait a week to get results but her fabulous neuro just happened to be there and he looked at it for us and said....

It is still abnormal (slow background and some spikes) but no seizures and even bigger NO HYPSARRYTHMIA!!!!!!!

This is huge!!!

Emily, at her worst, had over 200 seizures and hundreds of spasms in one day. Completely uncontrolled.

While I still long for her to have a totally normal eeg one day, I will take this!!!

Thank you Jesus!!!!

I promised pics last time so here are a few to hold you over. :)



Emily and her new cousin Sammy.





I had to tell Emily that she could not eat her baby cousin!





You can tell how much shorter her left leg is. It is up and out of socket :(





She is saying "Thanks Kathy for my new chair!" ha she does really well in it. I need to get a newer picture, her head control has already improved so much!! Thanks so much Kathy!!!





Loving on grandma!

She has become very attentive when you talk to her and she smiles at everything!

Emily loves the sound of a clicking pen and loves going from dark to light.

I love that she loves things, no matter how small.

 

We have so much to be thankful for and thankful we are!

 

Our God is the same in the good and bad and we praise Him the same!!!!

good times

Things are still going really well with Emily. It has been almost 10 weeks since her last seizure and spasm.

The side effects of ACTH are slowly going away and we are seeing a very happy little girl.

She is very aware of her surroundings and is doing new stuff everyday. She is lifting her arms up and even touching her face and mouth a little. Her head control is getting stronger and she even tries to correct herself sometimes when she falls over.

I have tons of pictures I need to put on here too.

Emily is having her hip surgery in a couple weeks so please pray with us about that. It will be very a long and painful 6 weeks for Emily. I am praying it goes by quickly.

We have so much to be thankful for right now. We are blessed to have these past 10 weeks, I am praying so hard this continues!!

I know so many kids that are fighting this battle with epilepsy and can't get any relief and it breaks my heart. I just wish we had a cure.

Get your purple ready!

Saturday is Purple Day!

This is from the website..Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. In 2010, people in dozens of countries on all continents except Antarctica worldwide participated in Purple Day. With your help, Purple Day 2011 will be even bigger!

If you go to the website you can see many ways you can help.

If you chose to wear purple don't stop there, talk about it! Tell people why you are wearing purple, tell them Epilepsy affects over 50 million people worldwide or approximately 1 in 100 people. That's more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined. Tell them epilepsy keeps getting research funding cut.

Look up your local epilepsy foundation and see what you can do to help. Do a fundraiser, involve your kids, co-workers, family or school. Educate yourself on what you do if you witness a seizure epilepsy.com is a great site.

There is SO much information out there!

This is last years purple day picture, my goodness how things have changed!

Emily has 12 more days of ACTH shots left. She is doing very well with the wean. We are seeing a little bit of her personality each day. She is still not sleeping well but that is not new :). She woke up yesterday at 4:30am but she was so happy and smiley. I have missed those smiles so much!

My cousin got Emily this shirt from the facebook page polkadot whimsy, isn't it cute!

It has been almost 6 weeks since Emily's last spasm, I can hardly believe it. I get scared saying that, afraid that "they" will return. We don't know if or when they will ever return but we cannot live our lives in fear of "ifs and "whens" so we are celebrating Emily.

She is an amazing little girl and I am lucky to be her mom.

Whats new?

When I started this blog I did it so that I could document Emily's life.

I am not great about keeping up her baby book, plus there is just not a baby book out there that would work for us.

I have decided that I will print my blog out (eventually) so I can keep all of these memories. So some blog posts you might be boring to you. :)

I just wanted to update what Emily is doing lately.

Emily is 19 months old now! I can't believe she will be 2 this June.

She is 21lbs and 29 1/2 inches.

She has 4 teeth. 2 top, 2 bottom

She loves her puppy Violet.



Talking to Violet



She will talk to it and laugh at it! It is programed to say her name and favorite things. She loves the bedtime music the most.

Emily loves anything with music! We keep musical toys all around the house to distract her when she gets crabby.

She likes watching tv now too. Most recently it is the Little Mermaid and she just watched Aladdin the other day and liked it too.

She is tolerating therapy much better.

We have seen quite a bit of improvement the past month. Most recently she is setting for about 30 seconds unassisted.

This is the best she has done! The boppy is behind her to catch her is she fell but she put her hands down herself and lifted her head up!

We are so proud!

We started Speech therapy 3 weeks ago. The therapist is amazing! I have learned so much from her already and Emily has already shown improvement with eating since she started.

Speaking of eating....Emily is eating, yes I said eating, 2-3 of 5 meals per day by mouth!! This is HUGE!!!

Prior to the diagnosis of IS Emily was breastfed and ate homemade baby food great. We did not have any problems at all.



Big bite!



After we weaned the ACTH and started seizures drugs on her she slowly stopped eating. That is when the g-tube was placed.

The ST taught us how to get the spoon in her mouth without Emily gagging or pushing it out with her tongue. Emily has discovered that she LOVES to eat again! I am so thankful we have found something new that she likes.

We have even seen some hungry signs lately too. You could never tell she was hungry but once she started eating we are seeing signs again!

Emily's seizures are pretty stable. By stable I mean she is having them daily but they are not clustering out of control often. I think once the past 2 weeks or so she had a seizure cluster that required extra meds to stop. They only time she is having seizures is falling asleep or waking up and if we can get to all the way asleep or fully awake she stops.

 The big issue we are having now is her spasms. She has hundreds of spasms daily. Spasms are seizures too. Most of the time they are bad but at least once per day she has a really hard cluster and the really hard ones lead to other seizures so we have to get rescue meds in her fast to stop the seizures from starting after the spasms have stopped.

It could be a lot worse but it could be A LOT better. We also realize this can all change in a moments notice.

She has been very alert since we weaned her topamax. She watches us when we talk to her and looks for us if we call her name.

We are preparing as much as we can for her upcoming hip surgery. I will update that later.

I am so thankful for good days. I cherish good days.

Christmas, vacation, surgery and teething oh my!!

Lots and lots of updates. I will be brief though.

I need to do several post to explain everything but I thought tonight I will catch everyone up.

Christmas was nice. Quite and calm. Just like we like it.

We had an impromptu mini vacation for New Years. The three of us went to Joe's dad and step-moms (Lonnie and Brenda) house Thur-Mon. It went so well. It was a 4 1/2 hour drive and Emily did fantastic! We all felt so relaxed the entire time we were there. It was so nice to have extra hands around to help with Emily. Of course Emily loved having her grandma and grandpa to love on her too!

I am proud of us for doing it. We only forgot one thing too HER KETO SCALE!! No worries though, I made enough meals to last a few days and then we bought another from Walmart.

It is hard to travel with Emily and we can't do it often but this trip was so worth it!

As long as she had her little puppy ,Violet, she was fine. :)

We had an appointment with ortho. Emily's left hip is out of socket and most likely has been for a while.

They will surgically fix it on Feb 14th. After the surgery she will be in a spica cast for 3 month and then bracing for a while after that.

This is what the cast will look like. She will be in the bilateral long leg hip spica.



She is off of topamax now!! Yay!!! Only on phenobarb and the ketogentic diet. This is the best seizure control she has ever had!

She is having a few-20 seizures per day BUT they are all very very short and only when she is falling asleep, waking up or after a very hard cluster of spasms. If we can get her all the way asleep or wake her up she stops.

She is incredibly alert and really looks for people. You can just see it in her eyes how much better she feels!

She is cutting her 4th tooth. Two on bottom and now two on top. This 4th one has caused her more pain though. Lots of tylenol and oragel and snuggles.

I will update more soon with lots and lots of pics!

Hope everyone has had a great New Years!!!

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?

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!!