Friday, April 30, 2010

So far it has not been a horrible night. Just a hand full of super short seizures.
Yesterday she had 71 seizures! The longest was 1 minute. I gave her all the meds I could and even gave her morning meds early. She finally stopped. She would wake up with each one, open her eyes seize, smile, and the go back to sleep. She did that for over an hour. It was an exhausting night.
The good thing is the new sleeping med is working pretty well. She has been sleeping from about 10pm to between 6-8am the past few days and she is more awake during the day now too.
Hoping for a better day for her. She has a new nurse coming today so a day full of training her.

Thursday, April 29, 2010

good/busy day

Yesterday was a busy day for us.
Emily now has a nurse 8hours/day 7 days/week! For now they come 1st shift, I prefer 3rd but apparently it is harder to staff.
I have to admit it is a little weird setting here with a stranger, luckily the first nurse we met is super nice and seems like she will be a great nurse. Of course it will take some time for us to get used to her and visa versa but hopefully in a short while I will be able to run errands or actually sleep. :)
Emily had an appt with neuro today, the nurse came with us which made the trip much less stressful because it is so hard to see if she is having seizures in the van or not. Nothing new there except Emily was finally awake for him for the first time in forever!
Speaking of sleeping....Emily slept yesterday from 10:30pm-6:30am!! She had several seizures but they did not wake her because of her sleeping medicine (we upped the dosage) She was a totally different girl when she woke up! So happy and then she was awake until around 10am. It was so nice to see her be able to sleep. Hopefully tonight I will be able to also!

Wednesday, April 28, 2010

So as you read yesterday was a pretty rough day. Emily had over 40 seizures, all under 30 seconds, but that is still A LOT of seizures. She finally fell asleep for a while but every time she would wake up she would have a little seizure.

When she did wake up for a little while she was so happy! Her aunt Cayla is with us and she had her talking up a storm! It almost sounds like she is saying nanny now too as she had recently began to say her n's.

Daddy had her laughing so hard too, it was the cutest!
When I got up from my nap I was going to play with her on the floor and do some exercise but she had other plans!
I got her on her knees, trying to work on her neck muscles, and out she went!

I guess it was just too comfortable!

She slept like that for about 20 minutes too!

So today we have a neuro appt and I get to meet our first nurse! I can't wait to meet them. I am a little nervous though but I am sure it will be fine. They are coming with me to the doctor too to help me.

Praying that tonight is better than yesterday!!

Tuesday, April 27, 2010

rough night/morning

It's 6am and I still have not been to bed.
Emily started seizing shortly after midnight and I had just given her her dose of sleep medicine, which we increased. She was so so sleepy but her seizures just would not let her little body rest. She was laying there with her eyes closed but she was not asleep.
I had to call the on-call neuro and she instructed me on what meds to give and to call her back if she did not stop. She had not stopped and it was almost 2 hours later and now she was wide awake!
We gave her more sleeping meds and I can give her one more dose of ativan before I have to call back. So far she is asleep but I need to monitor her because she has gotten A LOT of very sedating meds. Every time she wakes up she has a seizure so right now I am just trying to keep her asleep.
We are pretty much out of options right now (med wise) and I desperately want to keep her out of the hospital.
I did find out that our insurance approved us for a private duty nurse 8 hours a day, 7 days a week. I did not want to tell everyone until we knew for sure but they start on Wednesday. I can't wait! This is going to be such a blessing. I will be able to rest or clean my house for a change!
Please pray that we don't have to go back to the hospital today. Thanks!

Monday, April 26, 2010

yea right

This is a picture of Emily I took yesterday a couple hours after she got her first dose of chloral hydrate. As you can tell the last thing she was was sleepy! She was talking and what I call singing NOT SLEEPING!! Hey at least she was happy.
Then after that she did not really ever sleep much until after 4pm. She needs her sleep so badly and I don't know what to do. I guess we will have to increase the dose. I hate giving her so much meds!!!
So far tonight she is sleeping but how long is the million dollar question.
Busy busy day tomorrow so I am praying for sleep, at least a couple hours.
My dear sweet husband was my hero yesterday. I finally got to go to sleep at 6am and I asked him just to let me sleep 6 or 7 hours, that would have been noon or 1pm. When he came in to wake me I could have sworn that I had only slept 2 hours and he said it was 4pm!! I slept for 10 hours!!!
The sad thing is that I honestly could have slept 10 more. haha

Saturday, April 24, 2010

Cleavland or bust!


We are home! (again)


Emily was supposed to get choral hydrate while she was in the hospital to help her sleep better but we had just a tiny bit of drama with getting it. We found a compounding pharmacy in New Albany that could have it made and ready by the time we left the hospital, thank goodness!


We are so glad to be home again too. I love the nurses on 5W but I really love my bed and a few days on the chair/bed and the window bed are enough to kill your back for weeks.


While we were in the hospital this time we got a little bit of good news. We got her appointment for a 2ND opinion to Cleavland and it's in just 2 weeks!!


They have already scheduled a 3 day eeg. Doesn't that sound like fun? Three whole days with her head wrapped up with goop under it all. Her head always gets so hot to so I can not imagine how she will feel after 3 days. She will also be getting a PET scan. We will probably be there for a week.
This is what an eeg looks like.

So hear is to hoping and praying for a good night of rest!

I almost forgot something! This is what we came home to!!

A double rainbow!!

It was so beautiful! Thanks God!! :) Isn't He such a show off! haha!

Friday, April 23, 2010

catching up/hospital update

So we are back in the hospital again. We came back on Thursday morning.


Emily began to seize right at 5am, after not sleeping all night again. I gave her ativan a few minutes in and nothing, repeated in 30 minutes, still nothing, repeated again 1 1/2 hours into and still nothing.

I called on-call neuro (love her too!!) and I was told to give her her morning dose of phenobarb early wait 20 minutes. Still not stopping I called back and was instructed to give her evening dose of phenobarb and if that did not stop in 20 minutes I would have to bring her in.


I waited a little longer because I really did not want to come back but she was still seizing, slowing down, but still seizing.


I thought she stopped when we got into the parking garage, we waiting a little bit but she had another one so into the ER we went.


Luckily the on-call neuro called ahead and we went straight to admit express, which means we avoided the ER for the most part.


By this time she was done with that cluster of seizures it was almost 3 1/2 hours long.


We talked with the neurologist about her not sleeping and everyone agreed we need to fix that and hopefully if we get her sleeping under control that will help her seizures that happen when she goes long periods of time without sleep.


So last night she was supposed to get the new med, chloral hydrate, to help her sleep but she had a pretty bad round of seizures again and we had to give her quite a bit more meds so we could not give her sleeping medicine on top of it. So we needed to stay another night to give the chloral hydrate in the hospital to see how she reacts to it first.


We did get some good news though. We found out today that our private insurance approved a private duty nurse for 8 hours a day, 7 days a week for 30 days! That is a huge deal because the home health company said this does not happen often. They are coming out the beginning of the week to meet with us and see what our needs are. This means I can sleep soon!!!!


So we are hoping for a better night than last night.



I did get a couple of pictures of her smiling in her sleep. She is just too darn cute!

Thursday, April 22, 2010

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.

Wednesday, April 21, 2010

I will not sleep

What a day we had yesterday!
Emily started the morning out not going to sleep (again) she will normally fall asleep around 4 or 5 but yesterday was not the case. Close to 6am she began has seizures. She had a total of 6 (less than 10 second) seizures in 30 minutes. Two doses of ativan and they stopped.

Ok, after two doses of strong ativan and no sleep all night one would think this child would be really sleepy right? Nope, not Emily. She did not go to sleep until NOON! Thank goodness Joe's sister,Cayla, is here.

I tried everything to get her to sleep. Finally I gave her some gas drops and ahhh that was the trick! Cayla took her and rocked her to sleep and I finally got to sleep too.

Emily proceeded to sleep off and on for the next 12 hours and now its almost 1am and she is wide awake.
She has a appointment at 10am in Louisville for g-tube clinic so we can learn to take her g-tube out and put it back in if we ever need to so no sleep for me until we get home.
Again let me say thank God for Cayla!!! I wish she would just move in with us. Wink Wink!!

Tuesday, April 20, 2010

oh what a morning

So things here are still going good. Boring, nothing exciting, which is just how we like it!


Yesterday morning was a little rough though. Emily is back to not sleeping well at night so the morning came and I actually start to get good sleep I hear a very loud noise right out side of my window.


Of course, it's bulldozer! Why not a bulldozer first thing in the morning? So I am up now and I go ahead to get a few things done for Emily and my eye feels funny. I look in the mirror and my left eye is swollen! Not red, oozey, itchy, hot, nothing but swollen. Why not a bulldozer and swollen eye to start the day?


So we finally get some sleep and the rest of the day has pretty much been boring.


Emily has had a few split second seizures as she falls asleep. I mean they are less than a second long and she is not even in high ketones again from being on steroids.


Emily's aunt sissy (Cayla) is here hanging out with us for a few days. We have missed her. Everyone is just so busy so it is nice to get to spend some time with her.


Emily had occupational therpay yesterday too and she noticed a huge difference in her muscles. She does a lot of stretching with her and normally Emily fights it and hates it, this time she completly relaxed and Susan did not have to stretch as much as normal and Emily even tried to pull her legs up under herself!! Yay progress everyday!!!

Monday, April 19, 2010

Home.......

We got to come home yesterday.




This was probably the best hospital visit ever! Very planned and straight forward, nothing unexpected.

Going for a walk in a wagon at the hospital




Emily had 3 doses of IV solumedrol (steroids) and she responded very well to it. We were told she would come out of ketosis meaning her blood sugar would elevate and her ketones in her urine would stop but in true Emily fashion she did not do either.



Her blood sugar was 87 at the highest and her ketones only dropped to moderate.

She never does what the doctors and text books say she should do. What a rebel!! haha


We did miss a few of her regular nurses though. Missed you Britt and Julie!! Why you must go a learn things is beyond me! HA!



ALSO, I have some pretty darn good news. Saturday night in the hospital Emily went to bed at 12:30am and did not get up until 7 or 8am!!! I know!! I was freaking out too!!


She was woken up a few times by alarms and such but I got her right back to sleep every time. So that meant momma got sleep too!!! Yippee!!
She has been such a happy girl too!!



Currently as I am typing she is snoozing so I am praying that this is the beginning of a fantastic new tread for her!!

Mom! Get that stupid camera out of my face!!





I have met a few blogger friends so far and they have said the nicest and sweetest things to me and one in particular is Hallie. Sadly, on April 15Th she unexpectedly lost her son. Please click here to go to her site and please pray for this family. It breaks my heart to think of loosing Emily so I can not ever imagine how this family is feeling right now. Words cannot heal those wounds but we can cover this family in prayer!! I know Emily has a ton of prayer warriors too!!! Thank you all so much!







Also I just wanted to say that I have a bunch of visitors and not so many comments. I just want to know who is reading this blog and how you found it. :) A few people told me they don't know how to comment. All you do is click on the word comment right below the post you want to comment on, type your message and follow the instructions below that. Pretty simple. Also my email address is on my profile and facebook page is on the side if you ever want to send a private message.


Friday, April 16, 2010

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!

Thursday, April 15, 2010

Sleep? and a little random

After the night we had the other day yesterday was quite refreshing!

Emily slept a lot more, which I am sure is due to enormous amount of drugs she had in her system. Sleep was good though that meant I got to sleep more too. I do love sleep.

I think it is borderline sinful really. Before Emily I could not wait for Saturday morning when I could sleep as long as I wanted, seriously noon, 1 o'clock was not out of the ordinary for me. I could sleep an entire day away if I was allowed.

Not so much now :) Although I adore my reason for not sleeping, she is quite a little cutie pie, I do miss it most days.

Sleep is a daily conversation with Joe and I. Everyday he asks if I got any sleep. A few days a week I get to sleep in with Emily. She has two therapies per week but only one comes in the morning. Yesterday I just had a phone interview with medicare. Which reminds me (new subject now)

I spent two hours on the phone applying for medicare/medicaid (can never remember which one is which) and I was so surprised at how nice and sweet they were.

I spoke with one girl most of the time and she was sweet as pie and when our conversation was over before she transferred me to the social worker she said " I really enjoyed our conversation, you were very nice to interview and I will pray for Emily and your family I just know she will be ok one day"
I was taken aback because most of the time it is just not pc to say that. You could tell that they genuinely wanted to help Emily. It was nice to not have to fight to get something for her for once. Which reminds me we got a new home health company!!! YIPPEE NO more crappy home health!

The new company brought the pump we wanted, which weighs one pound and comes with a little backpack we can take with us and it come with a super light portable pole. Together it weighs maybe 3lbs.

Emily has been a little "high maintenance" too. She has really wanted to be held a lot more. I am pretty sure she is teething now. Every time I pick her up she bites my shoulder or anything else that comes near her mouth, good thing so does not have teeth now huh? HA! She is super drooly (is that even a word-i am pretty tired and a little slap happy too) She will have teeth one day or so I keep telling myself.

Last night when Joe went to bed Emily kept yelling Dada and he could come back and tell her goodnight again and she just kept up. It was very sweet, she really loves her daddy.

Tuesday, April 13, 2010

good streak broken...

We were back in the ER this morning.

Emily starting having her spasms at 3:35am and then very quickly started having clusters of seizures. It started out with very short seizures, 30 minutes in we gave her ativan, we repeated 30 minutes later because they were getting stronger and more frequent. I called the on call neurologist because it was now 5am and she was not letting up and she also began have clonic/tonic seizures, most people would recognize them as "grand mal"

We were told to give her diastat (rectal valium) and call ems because she had so much medicine in here and we live so far away from the hospital. By the time ems got here she had over 30 seizures with almost half being the "big ones"

*Let me take this moment and vent about the ems worker that came. We have had her before but Emily was not as bad then. First thing that made me mad was she refused to let me stay in the back with her. She said I could not "handle" some of the procedures (starting an IV). So I quickly told her NO SUGAR! No dextrose, glucose of any form!!! She did not understand (HELLO that is why I need to be in the back with you Einstein!) Not many health professionals know much about the ketogentic diet and those that have heard of it know very minimal info on it. I then proceeded to tell her that Emily is a very hard stick to get an IV started and unless you must please wait for the IV nurse in the ER (they know her) to do it. She again did not listen to me and tried. Yes I said tried because SURPRISE she could not get it! We wasted 10 minutes setting in my road doing this! She gave her 2 IM (shots in the muscle) shots of valium on the way and checked her blood sugar and I pretty sure she used the biggest needle they make to do these two things because of the marks they left on her!

So to sum up this ambulance trip-It sucked!!

The ER knows Emily pretty well know and they are always very pleased with our record keeping. We keep a daily journal of all of her medicine, feedings, diapers, spasms, seizures, ketones, blood sugar. We would be so lost without that journal!

They checked her phenobarbital level and it was low so they increased her dose and made us stay a few hours to make sure she responded ok to it. They said that feeding food was fine so tonight we gave her one meal instead of two so we will see if we stay home tonight.
Praying for a good night, now off to watch Glee!
*Let me add something to the above rant. First I am so thankful to have EMS be able to come and pick us up and safely get Emily to the ER. I don't want anyone thinking otherwise. I just wish that they would listen to me. I am the mother of a child with a rare seizure disorder and an even more rare diet. I know more about Emily than they do. I do not know more than her (medically speaking) but I can hold my own I worked in a hospital for 8 years, I picked up a few things. I am not the average "oh my gosh something is wrong with my child, what could it be!" kind of mom. I know what is going on with Emily. This is our 4Th experience with EMS and 3 have been ok, just in combination with everything else it was too much!

Monday, April 12, 2010

hello food!


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

I could not get it in her mouth fast enough.



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



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

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

sched

This weekend was pretty uneventful for us here in the Rollins' house.


On the weekends Joe really helps out a ton! That mean sleep for mommy!


Emily is such a night owl, normally she won't go to sleep until somewhere between 4-6am. Yup you read that correct. It is currently 2am and she is no where ready to fall asleep.


Everyone keeps telling me to sleep when she sleeps. That would be ideal BUUUT her schedule in the morning is a little busy.


I get up between 6-7am to take her off her feeding pump.

9am meds, g-tube care, change diaper.

10am check blood sugar, bolus her tube feeding (since she is sound asleep)

Fridays she has PT at 11am

2pm bottle or tube fed

3pm meds, g-tube care

6pm bottle

Mondays she has OT at 6:30pm

8pm make the formula for the next day

9pm meds and bath, g-tube care

10pm bottle

1230 am start tube feeding

3am change tube feeding(it clogs if I put to much in at a time)

start all over again.


Plus I have to make appts, talk with home health, nurses, insurance, people wanting their money (ha!) and at some point during the day I have to eat. So my point is I love the weekends!


Joe gets up around 6am and let me sleep as a long as I want to. Yesterday I slept until 1:30pm! It was pretty heavenly, plus he does lighten my load too with helping out a lot with all of Emily's care.


So this weekend I changed out Emily's clothes from winter to spring and summer clothes. I love summer clothes for little girls, they are just too darn cute!


Emily did not have a seizure free weekend but the few seizures she did have were super short, I think the longest was 15-20 seconds, but most of them were under 5 seconds. Before the ketogenic diet she would have countless seizures in clusters for hours so we have seen a HUGE improvement.


She has gotten such a personality to her lately too. Joe was holding her and he laid her down on the couch for a little bit and she laid there saying dada over and over until he picked her back up. She definitely has daddy wrapped around that tiny finger!


Also Joe and are such procrastinators. We just got out taxes done. On our defense we have been in the hospital a ton lately and that was the last thing on our minds. Since Emily was up until 10am that morning she slept through the whole thing!



Saturday, April 10, 2010

Boring

Yesterday was a pretty boring day. Those of you who have kids or family members with seizures know that boring is GREAT!

I am always too afraid to say out loud that she had a seizure free day, I guess I think I am gonna jinx it or something. I know better though, me saying that out loud will not make her have a seizure.
So I will say it, since Thursday at 7:48pm Emily has not had any seizures! It is 2am now and there is no telling what the rest of the night holds for her.
I have got to learn to rejoice the good days. When she does have a seizure free day I feel like I am spending the day looking for a seizure instead of enjoying that time with my (way too fast growing) baby.

I know the ketogenic diet is helping so much. Before the diet she never had a seizure free day and now they are coming more often!

She is talking a lot more too. Today she was making L and O sounds. The other day Joe wanted to hold her so he started to pick her up and with the tone of a teenager she said daaaad. It was the funniest thing ever! He promptly laid her pack down and she was fine.

So I am praying that the rest of this weekend is boring.

Hope y'all have a great weekend too!

Thursday, April 8, 2010

I love you


So I think we are going to start Emily on baby food again! Before the horrible side effects of her many seizure meds Emily was a fantastic eater! I made all of her baby food and she was not picky at all. She loved her veggies most though.


She slowly quit eating and it was so sad for me to see her not be able to eat. The past few days though she had tried to bite whatever comes close to her mouth! It is kinda funny. So I think she is ready.


So I got several ketogenic recipes from our amazing, wonderful, and newly engaged ;) dietitian, Stacy. I am a little nervous about it though. Change in anything with a seizure kiddo can bring on seizures so I am praying for a smooth transition.


I just wish there was something I could do to get her to sleep at night. Currently it is 2:10AM and she is squealing and kicking with delight. Don't get me wrong I am to the moon happy that she is in a good mood, I would just love to sleep at night because though the night there is less care to be done for her. In the morning, when she sleeps the best, I have to do her meds, g-tube care, feedings, make phone call, appts, deal with crappy home health companies (haha! can you tell i don't like them?) and it does not make it very easy for me to get good sleep.


I got a video of her last night, I say I love you to her probably a million times a day and last night it sounded like she was trying to say it! Just ignore me repeating myself over and over.






I was trying so hard to get a picture of her smiling but she would only smile after the flash went off. Also I understand that there are a few students in Mrs. Rollins class that check-up on Emily and like to see her pictures so I put this one on her for you all today. Thanks for thinking about Emily I told her that you all think she is cute and she smiled!

Wednesday, April 7, 2010

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!!

Monday, April 5, 2010

Great weekend!


Emily had her first Easter and it was a great one! Want to know why it was so great?


It is because is was a seizure free weekend!!!! That is right, her last seizure was on Friday at 1:50pm and she went all the way until now :( 1:00am. It was just 2 little single ones.


She slept so much better this weekend and she was so talkative! I think at one point she sad momma for about an hour and yesterday she was on a dadda kick. It is just too darn cute!


I think she is trying to say hi now too. I say it every time I pick her up and she will mimic me.

Joe's mom and step dad came down on Friday and stayed the night and they got to see how much more alert and talkative she is too. She laughed so much on Friday night.


It was such a blessing to see her like that.

I also broke out her summer clothes. We were very lucky to have a couple people give us some bigger hand me downs and I thought I would just see if the 12 month fit and they did! I was very shocked because she has always been so little but she if finally growing.


Sunday we finally got to go back to church! We have missed going so much. We have such a wonderful church family and they have done so much for us, it is hard to not see them every Sunday. We had such a warm welcome, I told Joe when we were leaving that I smell like so many different perfumes and colognes from hugging every one!! haha

My friend Rebecca took this during church. It is such a beautiful picture!


The message was great, worship was amazing as always. I listen to Christian music through the week but there is nothing like a whole church congregation lifting their voice to worship Jesus!




So I guess the last thing is some Easter pictures! I took a ton so I will edit them down. I know I never take pictures of this kid. :)



We colored Easter eggs, she was not too interested.



She would not stop talking long enough to get a picture.

Again, would not stop talking and I was trying to get her shoes but she was such a wiggle worm I could not get it all in. :)




After church she was so tired.





My favorite!
I hope you all had a blessed weekend!

Saturday, April 3, 2010

Eh

Eh, is how I feel. Not great but not the worst that I have been.

Emily has been seizing everyday. Some days are better than others. She has had a few seizure-free days and those days are fantastic! It just makes the days when she does have seizures seem worse.

She has only been on the ketogentic diet a couple weeks and we have seen improvement in the length and frequency of seizures but no amount of seizures is ok.

Emily's seizures are mostly tonic-clonic and come in clusters. Some only last 2-5 seconds and others will last 30-45 seconds. The past few days she has begun to have single seizures lasting just a few seconds and not going into clusters. Yesterday she had 2 clusters one was 13 minutes that had about 7 individual seizures and the other cluster was over 2 1/2 hours and I have no idea how many seizures were in that one.

So some times I think things are getting better than she has one for 2 hours.

I have heard of some kids seizures getting better after they began to wean off some of their seizure meds. Emily is currently on klonopin, phenobarbital, and levocarnitine routine and lorazepam and diastat for prolonged seizures.
I would love to wean her off klonopin but she has been on it for a long time and weaning will need to be very slow so she does not withdraw from it.

Also if I may continue to complain for a minute, I am not very happy with Emily's home health company. Professional and helpful are the last two words I would use to describe them.
We had a fantastic home heath and a wonderful tiny portable feeding pump through them but fantastic home health can not provide Emily's ketocal formula so we had to go through crappy home health and they threw a hissy fit and said they would not provide her formula unless they provided her pump WHICH would be fine but they will only give us a hospital grade 79lb (kidding) feeding pump. GRRR! I tried to get the formula through WIC but Indiana chose not to provide that formula but KY WIC does.

So after all that complaining I compare my suffering to Jesus'. Kinda makes you stop stop complaining a little huh.

As I am typing this Emily has fallen asleep (for a little while at least) and she looks so perfect. She is perfect in every way because God made her perfect. Not our idea of perfect, but His idea of perfect. Just like to Mary Jesus' death was not perfect by any means to her, but to God it was perfect. The wonderful thing though is a few days later Jesus was perfect to us all! One day Emily will be perfect to us all too! That is the promise we have in Jesus. He died so that we can one day be healed and be perfect with Him. I keep my faith in Him.

Happy Easter. I pray that you celebrate the true meaning and find comfort in His resurrection.