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!

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.

Neuro visit

Emily had a neuro appt with out favorite neurologist on Thursday.

I showed him the videos I took of Emily newest tricks and he agrees that it looks like spasms but the new thing that we think is a seizure he is not sure about.

She gets very still, her arms get tight, her eyes dart around and if you are quite she does not make any noises. If you talk to her she cracks up laughing! It is a cute, hysterical, belly laugh and not at all what you would think a laughing seizure would sound like.

She responds to us during theses spells which would indicate it is not a seizure but with Emily anything is possible.

So, no changes neuro-wise for now. He noticed how much tighter her arms are getting so we added a very small does of Valium in the morning to help keep her loose.

She has not had any spasms in 3 days though. Just 2 day in a row and nothing since. All 4 molars are coming in at the same time so we are dealing with some major pain, especially at night. So we just taking day by day and handling what ever problems arise that day.

Her spica cast is not bothering her at all. You would not know she was in a body cast by the way she acts!

The only time she is uncomfortable is in the car and don't take her many places.

The way her legs are bent and the fact the her legs are so short make the car seat even more uncomfortable. We have a pillow under her to make her fit in it a little better.

Thanks so much for everyone's prayers!

beginning to wean

We have begun to wean ACTH. We are holding our breath, praying and crossing our fingers.

It will be a slow process, about a month.

Since being on ACTH Emily has definitely regressed in most areas. She does not open her eyes all the way, her cvi has really gotten worse,she stopped smiling and being happy in general, she does not tolerate ANYTHING, and her sleeping is still crappy.

The only things that got better are eating and seizure control. We still have not seen any seizures or spasms.

She has been doing a lot of grunting lately. We took her to the pediatrician just to make sure it is not something respiratory and it was not. They said it was seizures-HOWEVER- I can stop what she is doing and the rule of thumb is if you can stop the movement it is most likely NOT a seizure. I called her neuro and he agrees and we have an appointment on Tuesday. ACTH has so many side effect the grunting is probably just one of them. At least I am praying so.

We did see a smile two days ago! It was just one but she has had at least one per day since we began weaning.

Loving this little grin!

Please keep praying that the ACTH is working and will continue to work!

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!



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.

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 :)

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

update time

First, our day started crappy yesterday.

At 7am I hook Emily up to her feeding pump for an hour because usually she is asleep and that way I can get an hour of sleep to. So I got up put her extension on started the pump and back to sleep I went. The pump was down an hour later and Emily was stirring around. I put my hand on her and she was soaking wet! My first thought was that she peed, I turned her to her side and the bed was soaking wet too! I instantly grabbed her extension and I did not hook it up right so for an hour 6 ounces of formula ran into my mattress!!!

Then I get her up and start getting her meds together, the nurse comes in and I get a phone call from the nursing agency. Medicaid has denied my nursing coverage. The nurse has to leave immediately. Mind you I have had 1 hour of sleep so far and Emily has a neuro appt at 1:30pm.

So quickly before the nurse leaves I took a shower and got ready and made some more phone calls and then off to the appt we go.

The appt was great. The result from her last eeg was so much better. She did not have any seizures during the eeg. This is the first time she has ever done that! We are also weaning her clonozepam (klonopin) too. Hopefully in 10days she will be completely off of it.

We also go the results of some testing she had done in Cleveland. Emily has a vitamin D deficiency which if common in kids who are not in the sun much, so we need to add that supplement. Another one of the genetics was normal, another they did not have enough blood to do it so we had to go the lab after the appt and get it redrawn. We were at the lab for almost 2 hours. I was so tired at this point. I did not leave the hospital until after 5pm. I rushed home, Joe had some dinner ready for me, I shoveled food in and fell into my bed for a few hours and now I start my day all over.

 

I am so thankful we met emily's nurse. She is more than Emily's nurse she has become a friend! Besides Joe, myself, and her nurse we have no one that can take care of Emily. No one knows anything about her diet, meds, seizures, g-tube, and therapies. So we are so thankful for her because if there is ever an emergency with Joe or myself I know we can call her.

It is hard when the people you are supposed to count on choose not to be the people you always thought they would be or should be.

It's amazing how having a sick child really filters the people in your life. At the end of the day you really know who you can count on.

Well I am hoping we can get this medicaid issues resolved quickly and get her nurse back. We are looking forward to a fun weekend!

Emily laughing in her sleep.

hold your head up

Emily had her eeg done yesterday No results yet and I can not read an eeg but to me it seemed better. I know that she did not mark it as much as in the past BUT Emily did not do the movement that she has been doing, the movement that I am concerned about. Little stinker.

Hopefully it will show some improvement though.

We have seen some improvement in the development the past week too! At times it sounds like she is mimicking us and she is making new sounds too. Her head control comes and goes but it is slightly better. Occasionally when laying on the floor she will roll to her side.

Last night I put her on her tummy, which she hates, and she lifted her head all the way off the floor! She did this several times too! I was so proud of her and she really did tolerate being on her tummy too!

It's amazing what you can do when you don't have 75 seizures a day!

1st time for everything

Well Emily had her very first virus.

It started on Tuesday night with a low temp of 99.5. I went ahead and gave her Tylenol just in case it started to go up through the night and we went to bed. I should have known she was getting sick because I slept from 11:30pm-3am and that never happens!

When we woke up I checked her temp and it had gone up a bit so I gave her some more Tylenol. Around 8am I checked her again and it was 101. I made her a dr. appt and they checked her urine and blood and every thing came back perfect.

He chalked it up to a virus and said to call if she still has a temp in the morning.

When we got home I checked her again and it had jumped to 103.7 so into a cool bath she went. That and Motrin in addition to her Tylenol have finally broke the fever. Last check she was 97.

The fever explains her strange behavior. Since her fever broke she it not doing hardly any of the weird moving or shaking.

She has to be fever free for 24 hours to not be contagious so I am praying that it was just a 24 hour bug and we can still have her party on Sunday.

I guess it's a good thing she made it until after she was one before she had a fever or a cold.

weird

Today will be a busy day for us.

Emily is going to get a new g-tube, next size up. She is beginning to get a little belly on her.

She has been acting a little off the past few days and last night I took her temp and she had a low grade fever. She has been very jerky, sometimes it's like she just can't stop moving. She mostly does it when she has her paci, if you take it out she stops. It is very strange. It does not look like a seizure but I am sure it's some neurological.

So I have to make a few calls to her ped and neurologist this morning on top of dealing with the insurance company.

Emily and I slept last night from 11:30pm to 3am!! I could not hardly believe it!! I have not slept at night in so long! It was fantastic. I am praying that she is getting back to a good schedule.

She just woke her self up laughing! Gotta feed the princess!! Have a great day!

I have had the worst time with medicaid. Ugh!! That is a whole other post!!

out of ICU

Emily got moved to a regular floor yesterday (friday).

This is her "room" in ICU. One wall and a curtain.

We have never had to go there before and I can honestly say I don't ever want to go back. It was not bad for us, it was just heart breaking to see all of the other kids there.

Emily was there because she was given a lot of medicine to stop her seizures, so they needed to monitor her very closely and fortunately she did great!

Privacy is definitely something you don't get there so you hear and see a lot of things you don't want to.

To hear the cry of a mother who just lost her baby is a sound I don't think I will ever forget. I have never been so thankful for Emily. I don't have to give specifics but please pray for that young mother.

The nurses and doctors that work there are some very special people and I have a lot of respect for them.

Enough with sad things.....

So, good news is Emily did not have a seizure that we saw yesterday. She has been extremely drugged and now that I think of it I did not see any spasms either, I will have to ask Joe if he did. Actually it's been 27 hours since her last one but hey who's counting? :)

I had a great talk with Emily's neuro dream team :) and we have decided to add a new medicine, lamictal. That drug will slowly be increased to her max dose along with zonegran. Once she is on those we are going to wean her off phenobarb and we have already began to wean klonopin.

So while she has been here she has been getting iv steroids and oral valium, that combination seems to really work when she has a major cluster like she had. In the coarse of two days Emily had over 120 seizures, that we saw, and that is not including her spasms that she has almost every time she wakes up. On top of her g-tube balloon exploding again, it has been a rough couple days for her.

I want to thank everyone who called and left us messages or send us messages on facebook. I am sorry if we were unable to return all of the phone calls but know that we listened to them all. We were not allowed to have our phones turned on in the ICU. I am thankful for the people who support us!!!

So if Emily behaves tonight we just may get to go home in morning. Keep your fingers crossed! If not we will go home on Sunday.

Please keep in mind if you plan on visiting in the hospital or at home please make sure you are healthy. Emily has taken another round of steroids which can lower her immune system and we need to continue to keep her healthy. Seizures are enough for this girl!

One last thing, June 19th is the epilepsy walk and we still have not met our goal of raising $500. Every dollar helps!

Click here -> Epilepsy walk

If you would like to walk with our team just click join team, if not you can donate any amount you like. It looks like we are going to have a pretty good sized team!! I can't wait. I am going to try my best to get shirts made so if you are for sure walking and would like one send me an email or message on FB and let me know sizes.

cleveland update

First I want to start off by saying thank you.

Thank you all so much for all of the kind words, prayers, and very thoughtful messages. It really did help us get through a horrible day. So many people love and care about Emily, even complete strangers, and for that we are eternally grateful!

Emily had a MUCH better day today. We did not see any visible seizures but with that being said since she is still on an eeg we saw many on the screen, mostly when she is sleeping or when she is falling asleep or just waking up.

She was much happier today also. We got lots of smiles and some pretty good eye contact too!

She saw the ophthalmologist, who was also great, and he said she does have CVI. Her eyes are healthy and her vision is perfect, her brain does not let her see properly right now. When we get home with will start a vi son program for her to help her see better.

Yesterday we met with the neuro/metabolic specialist, he was so great! He explained what he thought and what we are going to look for. He thinks Emily may have an early onset of Rett's syndrome or cdkl5. She has actually been tested for cdkl5 before and it was negative but apparently the lab the preformed the test is not "the best" so if all of the other testing comes back negative we are going to re-test her for that one. He was explaining that finding Emily's disorder is going to be very difficult. He described it to us like this-finding a typo in a book with 20 trillion letters in it.

Finding what is "wrong" with her may not change anything, but if we do find out we can prepare ourselves for what is to come and some disorders have other problems that arise in the future like heart or kidney issues and we can already be on top of things if we have a heads up.

So blood and urine were sent off and we should hear something in 4-8 weeks.

Also we have decided to change her diet slightly. Stacy if you are reading this I am going to email you all of the new info this weekend :)

She is currently on a 4:1 ratio *4 fat to 1 carb* and the formula that she is on has artificial sweetener and some people are much more sensitive to it so we are changing formulas and ratios to see if that will help at all.

I will leave you with a few pictures.

This is Emily's very first hotel stay. She looks pretty darn comfy.

Her eeg leads on. She did so great with them, all 4 days worth!

bad to worse

I am blogging this because it is too hard to tell 35 people the same thing over and over. Please do not get your feelings hurt because we did not call you and tell you personally. We are choosing not to call anyone right now. It is too hard to say what we are going to say. If you would like, you may call us later tonight and ask questions but right now this is how we are choosing to update about Emily.

Last night she had a really bad night. Really bad seizures that would not respond to ANY meds and they were very strong. They were getting ready to send her to the PICU-(pediatric intensive care unit) when she finally stopped.

So that was our night-BAD

This morning the neurologist-neurosurgeon/epiologist came in to give us the results of her PET scan. Emily's seizures are from everywhere in her brain. She is not a surgery candidate. He also said from monitoring her on a constant eeg the past few days she has a very severe form of epilepsy. We already knew that but we had hoped that the PET scan would show that she was a surgery candidate so that was a huge blow.

She does not respond to most meds so we are adding some meds to her already extensive list. Once she is on the new drugs well we will begin to wean her off her klonopin and then use klonopin as an emergency drug instead of ativan and diastat because neither of those are working for her.

Our new plan, since she does typically respond well to steroids (for a short time) is when she starts a big cluster of seizures we will begin a round of 3 days or so of oral steroids-starting now because as I am typing she is seizing.

We are also starting a new drug zonagran (tonight), there are only 3 drugs left he thinks could work for Emily and this is the first one we are choosing to try. We will also be increasing her phenobarb because her phenobarb level is still a little low and in higher doses she does respond for a little while.

We will also be meeting with the keto dietitian to see if there is any tweaking we can do with the diet because she is still not in large ketones. That meeting is tomorrow.

Our new goal with Emily is less seizures, seizure freedom is not realistic right now.-WORSE

The doctors here are amazing and incredible. Sadly there is just not much else to do for Emily. Only time will tell what the future holds.

This is the hardest thing to deal with because there has always been a next step, many other drug choices and tests. Now we are down to 3 drugs and that is it. We have hit a brick wall and it hurts.

So please be understanding that right now we are grieving again. It may sound horrible to say that but we are. We are grieving the hope that we had in new meds, new doctors, new tests, new outcomes for Emily.

The reason we chose not to call anyone is because this is hard enough to type let alone tell so many people. Emily does have a lot of people who love her. Again, it is not personal. It is actually selfish and right now that is what Joe and I need to worry about, ourselves and Emily.

We will be coming home on Friday probably. She is not stable for travel right now, so hopefully we will be home this weekend. We love you all so much and are so thankful for all the support we get. Please keep our family in your prayers. This is just more difficult then I thought it would be.

I love Emily so much and to see her suffer like this is beyond fathomable.

no rest for the weary

I feel like all I ever talk about is sleep. The lack there of I should say. When you never get good sleep that is all you can think about!

Emily did not fall asleep until 2pm yesterday! Joe came home from work and I got to sleep after 3pm and slept until 9pm when he had to go to sleep.

She had an appt with the nurse practitioner to look at her g-tube. Everything looked good. She commented on how good Emily looked(weight wise). Well she went from 2% in her weight before the g-tube and now she is in the 10%.

She also had quite a few seizures too. She is super gassy, from her formula, and I just know all of her teeth are going to come in at the same time! I have been giving her mylicon drops and oragel swabs to help but I am not sure how much it actually helps.

So I am praying that she does not have more seizure today, I hate giving her so much medicine but if we don't give her meds quickly then she spirals out of control and we have such a hard time stopping them.

Busy day today, therapy in the morning then an afternoon appt with the ped.

We are baaaacckkk! In the hospital that is.

Emily's neurologist and I had talked a while back about doing a round of IV steroids. At the time I wanted to hurry up and get her on the ketogenic diet. We made the choice to go ahead with the diet.

While the diet has been helping a lot her seizure control is not where we are wanting it to be. Since she has started the diet she has has 7 seizure-free days!! That is amazing to us but we know she can have more. So after some discussions with other IS mom's, a little research, talks with her neuro and a few prayers thrown in for good measure we decided to go ahead with the IV steroids.

When I discussed this with neuro he said when she starts to have another cluster of seizures go ahead and bring her in and we will start, right on cue Emily started just a few hours later. So here was are.

She has had her first dose. She will get a total of 3 doses in 3 days and then a little taper off. So that means a few days in the hospital.

This should be fun too because it is 4:30 and the princess does not want to sleep so I will sleep later I guess. Ha!

It's also thunder over Louisville this weekend and if you don't know what that is well let me just tell you. It is the largest fireworks display in North America. Over 500,000 people will attend and it is on the river and the hospital we are at is just a few blocks away. 500,000 people leaving at the same time just does not bode well if you are trying to get to the hospital so I am pretty glad we are already here.

So if you come down for Thunder stop by and see us!

rough

Emily did not sleep well (as in not at all) yesterday night in turn she seized all night and that keeps her from sleeping so when Joe got up for work at 4am I had not had a minute of sleep yet.

Emily had a long doctor appt today too so I already knew this was gonna be a rough day.

We finally fall asleep around 4:30 and just before 5am Joe wakes me up saying he was having chest pain. It was so bad he could hardly speak. Needless to say it scared the crap out of me. He was putting dishes up and he said a pain hit him so hard it almost doubled him over. He thought it might have been a muscular pain and tried to changed positions and breath through the pain but he just could not. I did not want to take any chances so we packed up and headed to the ER.

Luckily I had already packed Emily's bag for the day so she was pretty much ready to go.

We got there and there was literally one other patient so Joe got back very quickly and seen by the dr.

Chest x-ray, eeg, and blood work were all normal. They said he must had just pulled a muscle, gave him some pain meds and sent us on our way.

We were home by 7:30am. I know totally impressive for an ER visit by our family! HA!

I finally got 2 hours of sleep then had to peel myself out of bed and head off to the Dr. We are still in the same pediatricians office just switched to a different doctor in the group. She is a little more experienced with Emily's care.

I had mixed feelings about this because I have had mixed reviews about this doctor, but ultimately its up to our instincts and how we feel about them. We also met with her nurse who I am sure we will see more often plus I have learned that you talk with the doctors nurses a ton on the phone so it is good to build a good relationship with them. Joe and I were both very impressed!

I had not realized how much I was trying to do my by self and how much more help there is out there for Emily. I told Joe when we left I just felt like I could breath. Heidi (nurse) is helping us out a ton with calling companies and dealing with crappy home health company. She is also calling our insurance to see if we can find a way around crappy home health company. She is also seeing if we can get a nurse a few hours a week or more to help out.

I know there are a lot of family and friends who want to help us so much but it is just so hard when you are not medically trained because Emily's seizures are nothing like a normal seizure and her seizures change all the time.

I pray that one day we will be able to have family and friends be able to watch Emily and help us in that aspect. For now there is still a ton of things that you can help with. Cleaning my house is probably the last thing that gets done,not that it is getting done. I just told Joe last night I have no clue when the last time i vacuumed was. We have been having a couple meals a week from church brought to us and that is a HUGE help! Things like mowing the grass so that on the weekend Joe and I can spend time together with Emily or go to the park is another huge help.

The weekend is the only time Joe and I really see each other because when he gets home from work I try to take a nap so that I can be up with Emily all night. So when the weekend comes we try to get house/yard work done or go the grocery and that leaves us with little to no time together.

So while right now watching Emily is not area that can be helped, I would love some people to spend time with us so that they can begin to learn more about taking care of her especially if there is an emergency with Joe or myself they can at least be familiar enough with her in that situation.

Oh I almost forgot! Emily is in the 10% for her weight and head circumference! She has been in the 2-3% until now. She is below the 2% in her height though. She weighs 16.5 lbs!!

Doctor, doctor, doctor!

Between Emily and myself we had 3 doctor appointments yesterday!

I was very nervous about driving with Emily by myself but it all went well.

I did not realize how much stuff I needed to take for a day out. I had 2 diaper bags packed plus her backpack with her feeding pump and my purse. There is just so much stuff that could go wrong and if I forget something important it could mean a trip to the ER.

First up was Emily's neurologist. The appointment was pretty uneventful. Same ole same ole. Her 3rd round of genetic testing (lumbar puncture) was normal. We are waiting for one more test to come back though. They did check her carnitine level. (click the word for the long explanation)

Carnitine plays a critical role in energy production. It transports long-chain fatty acids into the mitochondria so they can be oxidized ("burned") to produce energy. It also transports the toxic compounds generated out of this cellular organelle to prevent their accumulation. Given these key functions, carnitine is concentrated in tissues like skeletal and cardiac muscle that utilize fatty acids as a dietary fuel.

Emily's was a little low so we are starting her on a supplement to bump that up.

The neurologist was very pleased about Emily's progress with talking and her alertness. She of course, in true Emily fashion, would not wake up for him. I honestly think he has seen her awake a couple times. We go back in a month and he said hopefully by then we will have an appt to go to Cleavland.

Joe called while I was parking and said his work was sending people home (involuntary) for the day and he got cut so he was going to be able to come to all the appts and help me (YAY for help but BOO for no money). Speaking of daddy he is a quick video of Emily saying dada. I think it is around 21 sec where she says it the best. She has him wrapped around her little finger. WARNING: Be prepared to turn your volume down! She gets so loud! Its funny but loud. I warned ya!

Next up was my appointment. My blood pressure has been high and the med I was on was not working any longer. So new med. Done.

While I had my appt Joe took Emily next door to her pediatrician to see if she needed reflux meds. The answer was we don't know yet. HA! The reason is that we have a very long appt with the main pediatrician next week. Because of Emily's needs we needed one with a little more experience with Emily's condition. So we are going to wait until we see her plus that gives us a little more time to see if it is truly reflux.

Beautiful week ahead so hopefully we can get out and to the park!!