what's new

I have quite a bit to catch up on.

Emily has had her 3 month post cast check up. That went great! You would never know she was in a body cast for 3 months 3 months ago! Her left hip socket is still very shallow and the ball is much smaller than the right. It's to be expected. We are in the process of getting her a stander. Praying that insurance will cover it.

You can see where the purple arrow is pointing how her left hip socket is a bow not curved in like the right socket. You can also see how small her ball is compaired to her right. When the hip is out of socket the ball does not grown.

In therory, if we can get her in a stander it will help push her femur and ball into her socket and help form her pelvix correctly.

She had a MRI of her brain and also had good news, no new atrophy. Which means her brain has no shrunk any more! Yay!

She had to be sedated with the MRI so we went ahead and had them do the ABR which is a sedated hearing test.

She had tubes in her ears and electrodes taped to her forehead and behind her ears. The result of this was great too! She even said the word NORMAL! I made her reapeat herself! :)

Emily has really been enjoying her iPad. She loves the fireworks app and anything with animal sounds. Her favorite is a kitty. Joe keep teasing that we need to get her a cat because she responds so well to it.

The new medicine, clobazam, is still helping. She has days with more spasms and seizures but her recovery time is so much better. The rescue drugs are working faster, when we need to use them.

The side effects are also minimal.

We went to Riley Children's Hospital to get Emily fit for a wheelchair, stander and car seat. They gave us a new car seat then. It was through the foundation and it is very nice and big! The car seat she was in was getting too short to keep her rear facing much longer. With Emily lack of head control we need to keep her rear facing as long as possible!

Now onto the fun stuff!

Emily loved the swings this time around!

My cute kitty cat!

She got lots of candy!

Me, Emily, Ava, and Angie at Halloween.

Just a reminder, my blog will not show up in your blog feed or on google reader.

Working hard and dr appt

Emily's left leg is still very tight and sore but we are stretching it more and more each day.

She is working really hard!

She is still getting lots of pool time in her water way babies pool. She knows when she wants to swim and if you don't get her in the pool asap she will let you know!

Emily finally had her 2 year check up. We had to wait until the cast was off for it.

She hates the paper on the table!

She cringes and wiggles and fusses.

So I put her back in her chair :)

She looks so big in this picture.

She is small. 20.11lbs and 30 in long. She will probably always be little.

They were pleased with the progress she has been making and commented on how alert she was.

3 hours later we had blood drawn, urine checked (they made her mad so she peed on the wall and the nurses ha!) a swallow study scheduled, a referral to a seating clinic at Riley Children's hospital to get fitting for a stander and a plan to help get some weight back on her.

She lost several pounds while in the cast and is not tolerating the over night feeds right now. 4am puke is never fun to clean up.

I am so thankful to have a pediatrician who really listens and a case manager who really does all the work ;). It is so important you and your child's doctor see eye to eye on their care.

New cast!

Emily did so well after her last hip surgery!

She did not even cry when she woke up from anesthesia. She was happy and smiling from that moment on.

I swear you would never know she was under for over an hour.

We checked in the hospital at 10:30 and were on our way home at 2:30.

The dr said her hip "looked and felt like a normal functioning hip" YAY!!



Pre-op-Happy girl!



The surgeon said her skin looked great and had no redness or breakdown. Score one for mom! :)

The cast was also very clean, thanks to the tip from another mom about lining her cast in duct tape.

We chose a bright green cast and I bought some zebra print duct tape!

It is very summer-y. It reminds Joe of 80's.

 I had to wrap tape around the bar because it was really rough and when we burp her we set her on our knees, the bar rest on our knees.

She has 5 weeks in this cast and then 3 months in a Rhino Cruiser brace just at night.

Also, for Emily's birthday she received several Amazon gift cards. I ordered a few things and wanted to share those with the sweet gift card givers :)

I got this swing. Our neighbours gave us the frame, it is a very small frame and perfect for Emily. The swing holds up to 100lbs so she will be able to use it for a long time!

I also got this lady bug constellation nightlight. I don't have a picture of the actual lady bug but I took a picture of the stars on the ceiling. It has 3 different colors and turns off automatically.

I have been trying to find something that will keep Emily happy at night when she is falling asleep. I, normally, have to let her fall asleep then place her in bed or lay next to her until she falls asleep. Soooo, tonight I tried it out and SUCCESS!!! I laid her in bed AWAKE and turned on the ladybug (purple light of course) and left the room. I checked back a little while later and she is sound asleep.

I also got this  molar teether. So far she does not care for it but i will keep trying. She needs those darn molar to break through! 

I am sure she will be glad once they all break through too!

adapting and playing

Since Emily is in her spica cast she cannot have a bath. We use an inflatable bath basin to wash her hair. It is not easy and she does not care for it either. I have a couple bowls of water and it gets very messy!

So I found this drip feeding bag and I found an old IV pole from when she had her feeding pump. Then viola!

I fill the bag with warmer than normal bath water, because it cools down fast and I can control the drip rate and wash her hair much quicker.

She got this stacking toy for her birthday and she loves it! She played with it tonight before her bath. :)

Emily's bed it attached to mine with the front rail off. I put on the little mermaid for her and tucked her into bed and within minutes she was out! We might have to watch the little mermaid more often!!



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 bye ACTH

That is it! All done!

Emily had her last shot of ACTH yesterday (Tue)

24 hours without it has already made a difference. We have seen more smiles and more of her personality.

Emily started ACTH on Feb 4th and has been spasm free since day 8 of the shots. Almost 8 weeks with no seizure or spasms has been fantastic!!

She is sleeping 8-9 hours at night! Not always straight but when she does wake up usually a diaper change and repositioning does the trick. She takes melatonin and a little valium, we finally found the magic combination.

She is happier all around. The past month or so she began grunting when you did anything to her that she did not want to do, which was pretty much everything. The grunting went down a lot just in one day.

Her eating has not changed either. Many kids go on a food strike when coming off ACTH but Emily's appetite has not changed thankfully because she is only in the 5th percentile of her height and weight. We need to beef this girl up! She looks like a chunky girl but she really isn't.

I am just so thankful she is such a good eater. She is still eating 100% by mouth. Only meds and water in her g-tube. We try giving her water by mouth after each meal but she does not like it and tends to choke. We are working on it though.

We have so much to be thankful for. I know that in a heartbeat all of this can change. I am aware how vicious and mean epilepsy is. I am also aware how strong my little girl is and we are celebrating each day!!

We are praying this continues.

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!!

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!!!

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!!

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!



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 :)

holding my breath

It has been a little over 24 hours since Emily's last seizure. Yes, you read that correct! She went from having 100-200 seizures on Sun and Mon to only having 2 on Tues early morning and now none.

She had a neuro appt on Monday and we made some changes with her meds. We stopped her keppra, began to wean her phenobarb and increased her topamax. Almost instantly we saw an improvement.

Yesterday she was so much more alert and awake. She did great with her OT too.

Emily had her first hearing test, besides the one when she was born, and she passed it perfectly. I never questioned her hearing but some doctors and therapist have because she is very selective with whom she interacts with.

She has been so happy and smiley too! I love to see her feel better.

Unfortunately because of all of her seizures her sleep schedule is crazy again.

It is 3am right now and this is the cute face sitting next to me!!

 Can you hear her scream "talking"? It is funny but dang I am tired. :)

Just so glad I am up with her at 3am doing this and not counting seizures.

Fun in the sun

We took Emily to a public pool for the first time today.

We have a great pool not too far away from home, it has a couple of big water slides and a great splash area for the little ones.

I was not sure how she would do because she tends to shut down when there is too much of anything, sound, smell, light, ect.

I walk through some mist first to see and she cringed. We got into the big pool next and she did not like it at all! It was cool but not take your breath cold. That bottom lip came out and she started shivering.

I stayed in long enough to take a couple pictures with my best friend Angie and her little girl and then handed to Emily's nurse.

Emily has an eeg scheduled in the morning. We still have not seen a seizure since the Sunday before last. I can't wait to see what this says.

I thought this was sweet. He was just sitting there watching everyone.Emily was done! Just hold me!
Oh that face!
Emily's bff Ava. She is 3 months younger than Emily but has always been bigger. She is so cute!
Angie's son Jake. He is just such a sweet boy !