Sunday, February 28, 2010

picture post


My friend Angie and her family came to visit us in the hospital yesterday.
She has a daughter, Ava, that is 3 months younger than Emily.
We are just sure they will grow up to be best friends!

How cute are they with their chubby cheeks!!

Come on friend, lets go play!




Ava reached out and held her hand. It was so sweet!





They were talking to each other, there is no telling what they said about us! hahaha!






This is my favorite picture! I was talking to Joe and did not even realize that Emily was holding my thumb. Like I said on my previous post Emily does not normally grab things purposefully, so when I looked down and saw this it just made my day!! I love this little girl!!




*Quick update-We are still in the hospital. Emily is not eating enough by mouth. They said she should be eating appx 32oz and yesterday she took in about 17oz. So we will see what the doctor has to say today.




Friday, February 26, 2010

Emily loves her daddy



We had a pretty good day.





It started out rough because she had to have a NG-tube placed but she did so good. She barely cried. They put 4 ounces of formula and breast milk in and she tolerated it very well.





4 hours later they wanted us to try and feed her a bottle and what she did not eat they would put down her tube. Well she ate it all! The doctor said sometimes it just takes a jump start.






We just fed her again and she ate almost 3 ounces. She is very tired because she just had a pretty long spasm so they put the last ounce down her tube with her pm medicine.






I have to share what a daddy's girl Emily is.



She has been pretty content all day. Not happy not fussy just OK.



Joe walks in the room and sets down behind her and he said one word and her face lit up! She began looking for him and he walked around and she could not stop smiling!




Even with a feeding tube she was so happy to see her daddy!



My friend Angie took me out for dinner tonight. I was so nice to just get out of the hospital even just to eat dinner and chat with my friend.


While we were eating Joe text me and said, "Emily is grabbing the bars on her bed." I know that might not seem much to you all but to us it's a big deal. For her to know that something is there and that she can use her hands to touch it is a new thing. She is learning more and that is so great!!!


He sent me this picture. With the caption "Get me out of here!"



Oh, I almost forgot! If Emily keeps eating the way she is we just may get to go home tomorrow!!! It's a big maybe but hey it's still a chance.


Thursday, February 25, 2010

tubes and changes

We are still in the hospital and from the looks of things we won't be leaving until next week some time.

Emily is still not eating much at all. Today she had a grand total of 3 1/4 ounces of formula or breast milk. Yesterday was even less than that.

We knew it was coming but we still did not want to hear it...The Dr. is putting a NG tube in tomorrow. For those of you who don't know what that is, it is a small tube that goes in one nostril and down the throat into her belly. It allows us to feed her or give her medicine when she can't or don't want to eat.
I know it is temporary but still its hard to hear.

Right now it is what Emily needs to grow and get better.
Also, in the morning we are going to stop her klonopin and keppra all together and we will be increasing her sabril.

Her spasms have returned but she has not had one big seizure!! They are fewer and shorter also. She is down to 3-9 and mostly under 3-4 minutes.

The doctors are not worried about her spasms right now and they believe with the sabril increase she should stop that too.


You know we came into the hospital on Tuesday just to give her fluids for 24hours then go back home. Little did we know this was going to be our longest stay yet.

Emily is still very sleepy. We don't know if its from the klonopin/sabril combo or just the sabril itself. She has never became this sleepy on any med before so I think its probably the sabril.
They also think she may be coming down with a little virus. It just sounds like she can't clear her throat, but only when she eats or tries to breath through her nose. She does not have a fever or cough so I am not sure I agree with them on this one. Personally I feel like its due to low muscle tone and that may also explain why she is not eating. I think its just too hard to swallow because all of her meds have made her muscles so very weak and to swallow properly you have to have some muscle control.
No pictures today. Joe has to go home and get more clothes and wash the ones we have here after work tomorrow, so I am gonna have him bring my camera up.
Hint hint honey if you are reading this!! love ya :)
So if you will just pray for our day tomorrow. It will be a hard one.

Wednesday, February 24, 2010

Can I get an AMEN!!!

Ok Ladies and Gentlemen, hold on to your hats cause we have some great, fantastic, wonderful, and A-MA-ZING news!!!
Emily started sabril on Monday night at 9pm, she had 3 infantile spasms episodes after the medicine was started (no big seizures though)
Yesterday she had a total of 3 all day with the longest lasting 3 minutes and that was at 7pm.

I may be a little premature in rejoicing, but what the heck I am gonna rejoice!!!
Since 7pm yesterday she has not had ONE SEIZURE, SPASMS, TWITCH, OR JERK!!!!
PRAISE THE LORD!!!


I do understand that this may be what they call a "honeymoon stage" where it works for a while then her body gets used to it and it stops working. I am not gonna focus on that right now though.
We have something positive to look at now!!

On Monday night before we gave her the sabril I sent out a mass text to my prayer warriors and had everyone pray with us at the same time.
Joe and I held this little syringe of liquid and we prayed and asked God to let this work.


Even if its only one day she is seizure free I will still rejoice and Praise the Lord!!
This is a victory and I don't know about you but most people celebrate victories!!
Heck who needs a gold medal in the Olympics just give me one seizure free day with my baby.

repeat

I feel like my life is stuck on repeat.




We are back in the hospital....again.




On Monday morning Emily had her first grand mal seizure. She actually had 2 of them about 12 hours later had another one.


We were terrified so we took her to the ER. After 5 hours of waiting to see a doctor they just sent us to her neurologist office.


Pretty much all he told us is she has seizures and this will happen. He also said that we have all the meds that they will give her in the ER at home and he wants to keep her out of the hospital so she doesn't get sick.




So logically where do we come the very next day.........THE HOSPITAL!!!




We started the sabril on Monday night ( More on that on the next post) and it completly knocked her out. She is on a very high dose of klonopin already so I guess it was just a lot on her system because she quit eating. Monday she barely ate more than 4 ounces, yesterday I had to force 1/2 an ounce in her and so far today she has not had anything to eat.


So they admitted her for 24hours to give her fliud and decrease her klonopin a little.




Bless her heart, from all of her recent stays she had no veins good enough to put an IV in so they had to put it in her head. :( They really tried everywhere else first but it was they only place left.


Its not the greatest pic but you can see her little head.

OK I am off to do another post!



Tuesday, February 23, 2010

happy video

I took this video the day before we had to go back to the hospital last week.




Emily is starting to laugh more and I just love to hear that little laugh.




Let me warn you though, she has just eaten a little bit so she is messy.
I was getting ready to give her a bath so I didn't clean her up after eating.





It's so cute, sometimes if I laugh she will laugh back at me.














I think we all need something funny to lift our spirits!!!






Listening to her laugh just makes me want to cry! ( tears of joy ) I love her so much!!

Sunday, February 21, 2010

Too much

Some days are just too much and today is one of them.


I try to stay positive and be calm and strong but today I am none of those.


I am not wanting pity or anything, I am just venting.


Emily has starting a new seizure and its scary. I got a video of it but for some reason I can't upload any videos...grrr
It starts out as a small twitch then turns into her shaking a lot harder, much more recognizable as a real "seizure". It only last 15 seconds or so but it is terrifying.
The crazy this is though, when Emily is having a seizure she stills smiles and sometimes laughs. Every single doctor keeps saying she shouldn't be doing that but Emily is different from the rest. She is a princess!!


We gave her an extra dose of klonopin like we were told but it did not stop it. We called the on-call neurologist and it was the same Dr. that sent us to the ER on Wed so she knew us. Thank goodness.


We were getting ready to give her oral valium when she starting crying, that is a good sign. It means she is coming out of it. So for now we hold the valium because with all of the klonopin she is on it could suppress her respiratory system because the two meds are in the same category.



We did have to give her that extra dose of klonopin and she is already on such a high dose the dr. told me to make sure and watch her closely tonight. So.... no sleep for me.



I really try not to complain too much. We are so blessed and I don't want to look ungrateful for any of it.


Sometimes though its just too much. Sometimes I can't stop crying. Sometimes I get so mad because I have no one to be mad at. I can't hit seizures. There is nothing for me to get mad at but I am still so mad!


If you have ever had to deal with seizures than you know the feeling when your baby/child is having one and all you can do is watch. You know the damage that is happening and all of the potential danger that could happen.


It hurts me so deep that I feel sick sometimes.


I would take this from her a million times over if I could.

Please pray for us today. I really don't want to go back to the ER. We will if we have to but....

We start the sabril on Monday, I am holding out hope that this medicine will help her.


Friday, February 19, 2010

Going home today

We are hopefully gonna be going home soon. Just waiting on the final ok by the neurologist.
They changed Emily's meds around and it seems to be working a lot better.

The thing with any seizure disorder, you have to find the right combo of medication that works.
Every ones chemical make-up is different so some meds will work better for others and that is what we are learning.

They stopped her dilantin, valium/ativan and tripled her klonopin dose and we are going to begin weaning her keppra soon.

Also the vigabitrin/sabril is in the works, we should be getting it delivered at home today or tomorrow.
This combo of meds have really helped get her seizure activity under control.
Wednesday she had 13 including one that lasted over 50 minutes. Yesterday she had 7 with the longest being 24 minutes and today she has only had 2 with the longest being under 3 minutes.
She is sleeping a lot better too. We are beginning to think that may be one of her issues.
She has NEVER slept well. She normally would only sleep for 2-3 hours at a time, even through the night. I know sleep deprivation can increase seizures.
With the much higher klonopin dose comes increased sleepiness and she really has slept a whole lot more the past two days.

One thing that is different about Emily is that she looks like she is having classic infantile spasms but nothing shows on the eeg and she does not space out like normally happens when you're having a seizure. She sometimes smiles, laughs, kicks with excitement and will focus on things and people.
That is what has all the doctors confused.

There is one thing that is really bothering me. When we came to the ER none of the triage nurses knew what IS was , I can kinda get that because it is rare, but the ER resident didn't know much about it either. That really disturbs me. This is the hospital we will be coming to for any emergencies and I need them to understand my daughter. What options do I have to make sure they are informed? We get a survey to fill out and I will share all of this with them but what else can I do?
I know that she is not the only kid with IS that comes here, there is another kid here right now.
Don't get me wrong, I do like our hospital. Once we get up to the neurology unit I feel so much more comfortable. Most of them up here know Emily, even the IV nurses know her now.
I just want to make sure Emily gets the best care she can get.


I pray my next update is one where I say she has not had any seizures today.

I have faith to move mountains and I will continue to pray for strength to move this stupid, horrible, ugly seizure mountain.

Thank you all so much for the support and prayers!!!

Thursday, February 18, 2010

back in the hospital....

So here we are back in the hospital....again....
Last night Emily started with her Infantile spasms jerking, after 5 minutes we are to give a klonopin. It did not stop we are to repeat the dose after 5 more minutes. I believe we actually gave it about 16 minutes in. 20 minutes in she stopped but then started this shaking/tremors.
I called the on-call neuro and they said to bring her in.
It was almost an hour by the time we got here and she had finally quit. I know she had a real seizure this time because after she was done she cried inconsolably.
She had a couple small ones but it seemed to be over with. A little while later they admitted us and all seemed ok then she started again.
This time she did her infantile spasms jerking for almost 50 minutes. Mind you she had her 8pm meds (dilantin and keppra) and she also had 2 doses of klonopin right before we came in.
The doctors gave her a dose of IV ativan, still not stopping, so they gave her another dose. She didn't even go to sleep! That was double the amount that should have knocked her out. She continues seizing and we had exhausted most IV seizure meds except one and the Dr. was getting ready to give it and she finally stopped. PTL!!!
She is currently asleep as I cautiously type.
We got the ok to start vigabitrin(sabril) but it has to come from a speciality pharmacy and it could take a couple days to get it. I pray we can get it soon because she is not responding to anything!
Also the neuro called me today and told me he faxed her eeg to the Cleavland clinic and they think during her video eeg she had one very long seizure. It was a 30 minute one but the said she did not appear to have any others.
I just want answers and it is so hard just setting her and not knowing.
Also tonight in the ER the dr down there had not clue about Emily's diagnosis. I had to tell him everything about it. He asked if I was a nurse and I told him this is my job I have to know all about it.
Please pray for all of us today. Joe just got to sleep after being up for 24hour and I have yet to sleep. I am not so worried about that as I am for my baby.
We need answers and a treatment that works............... Desperately. I love her so much and I just can't stand this anymore. I hurt for her. I long for her to wake up and not have a seizure.
I will update tomorrow after I talk to the neuro.
Thanks!!

Wednesday, February 17, 2010

Update time!

We had a neurology and an eye doctor appt today. It was a VERY long day. We left the house at 9am and did not return until after 7pm. I am so proud of Emily though we had no major melt downs and she rides in the car so much better!
Our first appt was with neurology and let me just say I feel so much more confident with our neurologist. I feel this time that he really does care about us.
So Emily is still a mystery. He sent her latest eeg to the Cleavland clinic for them to look at. Emily presents with seizure-like activity but her eeg shows no active seziures. Her eeg is more organized and her hyps (bad pattern for an eeg) have cleared up but it seems she is still having spasms and very small seizures through the day.
Her newest seizure is very short, very small twitching of her hands, feet, and mouth. She actually did it in front of the dr. today. Here is an example of this type-this video is a couple weeks old, she now only will do this shaking for 10-15 seconds. Most of the time I probably miss it.

So today we increased her Keppra and Dilantin and he sent us to the eye doctor to get the ok to start the sabril (vigabitrin).

The eye dr was great and we did get the ok to start the medicine. We have to follow with him very closely because one of the side effects of this med is peripheral vision loss. Emily HATED the eye drops! That was her only melt down of the day. She was tired and hungry and she just did not want to be held anymore.

She loves to just lay on the couch on her bobby and stretch out so for her to be held or in her car seat all day was asking a lot of her but she did so good!

Our hopes with vigabitrin is that we will be able to start to wean her off of some of her seizure meds and that we will gain seizure control and she will begin to improve developmentally.

Her occupational therapist did notice better muscle tone and she is not a tight either.

Poor thing though she is losing her hair on the back and side of her head. She does not hold her head off the floor, pillow, boppy yet and she has begun to turn her head better. We turn her on her sides as much as she will tolerate it and she hates tummy time.

So I guess for now I just need to find some wide headbands to cover her little bald head. :)

We also are waiting on genetics testing. She doesn't really fit any obvious disorder so we wait and see what the next tests shows.

He does believe it is genetic but for some children its just such a rare cause they may never find it. I did get a letter about one of our tests and if insurance does not cover it they said it costs $5,000. So lets pray it covers it, i find out tomorrow.

From here if this medicine does not help will will start the Ketogenic diet. I can't explain it well it like Adkins on steroids. All fat with a little protein, no sugar at all. They don't know why it helps but for some kids it stops the seizures. We will do more research on that later.

We will be going to the Cleavland clinic soon for a 2nd opinion. After she gets started on the vigabitrin he wants us to go up there and see what they have to say. The neuro says its one of the best in the world. I have not done much reasearch on them yet though.

Pretty good day and the great news is we have nothing to do tomorrow, no therapy, no appts, just rest!! I get to sleep!! AHHH.....

Monday, February 15, 2010

This says is all

I have come across this on several different blogs now and it's just a beautiful way to explain how I feel.
She wrote this essay about having a child with downs syndrome but I think it can apply to many different situations.

"Welcome to Holland": "'Welcome to Holland'
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.

You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, 'Welcome to Holland.'

'Holland?!?' you say. 'What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.'

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts."

But everyone you know is busy coming and going from Italy.........and they are all bragging about what a wonderful time they had there. And for the rest of your life, you will say " Yes, that is where I was supposed to go. That's what I has planned."

And the pain of that will never ever ever ever go away...because the loss of that dream is a very significant loss. But...if you spend you life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

Thursday, February 11, 2010

Still no answers

My internet has been down for a few days so I have been unable to update on Emily.




We left the hospital on Tuesday still with no answers. The results of her 23h VEEG (video EEG) said that she did not have one single seizure while she was on it. We saw her have 16 episodes that looked like infantile spasms. Her legs kick up and as she lets out a small grunt while she does a little crunch. One of the reasons he believes she is not having seizures while she does this is her behavior while she is doing it. She smiles, laughs, kicks, makes eye contact, nurses and babbles.


Before she did ACTH injections her seizures were much different. She would kick her legs up but she would also flail her arms out and turn her head to the side and occasionally cry out or moan with each one. When it was over she would scream, cry, and then go to sleep. Which all are very typically responses to having a seizures.


She no longer cries or goes to sleep after her episodes.


The neuro just kept saying "Emily is a mystery". I asked him flat out is this a good thing and all he could say is her EEG is very abnormal. Every 5-10 seconds she has a firing on her eeg for a potential seizure. Due to those results we changed her meds around completely.


The change in meds have seem to have helped. We went from 15-20 seizure-like episodes in the hospital to so far at home 4-9.

We want to be happy but its just so hard to because I have heard of some seizures that don't show on eegs. We have another appt with our neuro on Tuesday and I have a lot of questions for him. We also have an appt with a ped. opthamologist to see if we can begin vigabitrin (sabril). There is a potential side effect of peripheral blindness with this medicine, so she will have to have to be followed closely by the eye dr to try and prevent that.

How do they do vision exams on babies? That seems very hard to do.

We also started Emily on melatonin at night. She is having a hard time sleeping at night and that makes for a grumpy mommy and baby. It seems to help a tiny bit. I will take a tiny bit though.

Emily has been so much happier the past couple days. We are even getting a few chuckles out of her every now and then. She smiles ALL the time now. If you knew Emily before all of this you know she never smiled. I never get tired of seeing those smiles!!

Monday, February 8, 2010

Mystery baby

Emily's neurologist came in late today with the results of her 24h video eeg.


During a video eeg they hook her up like regular except in our room, with a camera on her the whole time, and there is a button we push every time we think she is having any seizure activity. We pushed that button 16 times and one of her seizures lasted over 30 minutes. They called in the on call pediatric team because they thought she might go into to status. They gave her more meds and finally it stopped.



So the neuro doc reviewed the eeg and gave us the very confusing results. He said that out of the 16 times we pushed the button she did not have one seizure. We even sat down and reviewed the 30 minute one with him. We showed him what we saw and he showed us on the eeg that there were not seizure activity to match it.



She does have frequent potential activity that could cause seizures if she is not on seizure meds. We stopped her topamax and routine klonopin and started her on dilantin and keppra.


Just being off topamax her appetite has increased ten times and she is moving more!! Its crazy what those meds can do to them.



This is her lifting her arms up. This is a huge deal because up until now her muscles have been so tight she would scream if we lifted them and now she is doing it on her own!!


So needless to say we are so confused. We are overjoyed with the news that what we thought was up to 20 damaging seizures a day aren't.
So now we start the process of trying to figure out what she is doing. I will try to get a video of it up in the next few days.

I am so happy I could just jump out of my skin!! God is truly giving us a miracle. Thank you all so much for all the prayers and kind words!!.


Hopefully we will know more tomorrow.

hospital update


Well we are still here at Kosairs children's hospital. It looks like our neuro wants to keep us here until at least Tuesday.


Emily has been acting much different. Over the past few days she has been LOADED down with so much medicine that she has absolutely no muscle tone left and has no appetite.

I nurse her as often as I can but due to stress, not eating and not sleeping my milk supply is dwindling and she just straight up refused to drink the formula. On top of all the she won't eat baby food any longer. I am not sure if it is because of her lack of appetite or the lack of muscle tone to swallow well. Either way if you put medicine or a spoon of food in her mouth she gags and won't swallow it.


She has given us a few scares where they thought she was status, which to my understanding is where they seize for so long they stay in a constant seizure. Both times the eeg showed she was not. She is now getting a 23 hour video eeg and so far, over 12 hours into it, she has had over 14 seizures. One very long one lasted over 30 minutes but we finally got that stopped.

my baby with her eeg monitors on. they wrap her head so the leads don't fall off.

They have also changed her meds around. Every med has its own horrible side effect. I just pray that this evening when her neuro gets here he will have some more answers for us.

This time around in the hospital has been harder on us. Joe and I are not sleeping much at all. Her seizures are lasting longer and the meds don't seem to help like the first visit we had.

I want to share some feelings I had while setting in the ER for 8 hours yesterday.

As Joe and I sat there with our beautiful baby I watched as parents came and went through the ER doors. Some had a cold, others had more severe issues like rsv but one little girl across the hall from us had a UTI. I watched this family, well kept, mom was 7-8 months pregnant daddy helped his little girl to the bathroom, she skipped back to her room. They were nervous when the nurse came in and said its a really bad uti, we have to give her very strong antibiotics. The nurse got her prescription and some handouts for the cute little family and they went on their way.

I couldn't help but feel a little envious because I know that the nurse is not going to walk in and hand us a prescription and a handout that will fix my little angel. At this point I am not sure if I will ever have more children (waiting on genetics testing). I don't know if Emily will ever skip with her daddy. Our future on earth is so uncertain with Emily and its just not fair! I am mad, hurt, disappointed, sad, crushed, devastated, let down, in despair, numb, and above all THANKFUL!

I may sound crazy to some but I could not be more thankful for Emily. She made me a mommy. She needs me, loves me, and when she looks at me purposefully and smiles it takes all that pain and anger away.

Emily may never be a "normal" baby and that really hard to deal with. I am grieving the baby that I dreamt of having. At the same time I am rejoicing in the life that I do have with her.

I am not going to lie, this life is hard. I am so physically and emotionally tired, no change that to exhausted, all of the time.

Between watching around the clock for seizure activity, making sure her meds are given at the right time and right dose, doctor appts, physical and occupational therapy, stretching, feeding her takes a lot longer and so does bathing her, I have to remember that she is still a baby. She still needs to have play time and get out in the world and experience life. I am trying my hardest to do all of those things. It is just so hard.

I don't want to offend anyone with what I am about to say. I know raising children is hard. Obviously I don't have teenagers or more than one but tonight when your toddler is screaming because he/she wants chips for dinner instead of the wonderful meal you slaved over the stove to make them, don't get mad, be thankful that they can eat what they want and can tell you.

When your teen storms off after you two had an argument and you just want to punch a hole in the wall and ship them to someone elses house for the rest of puberty, stop and look at the blessing you have and the adult they will shortly be.

Some people may complain because they don't have enough "me" time or the house is mess because the kids have been playing or you have to take the kids to the doctor for a runny nose and cough for the 3rd time this month. Just remember to stop and be thankful for your kids and their health. I know a lot of people take it for granted. I know Joe and I did in the beginning.
Cherish every moment you have and every I love you they say.

Tonight as you say your prayers thank God for your children and their health.

Lord, I am so thankful for my Emily. You gave us a beautiful princess to love. I am a better person because of her. I know you have the power to heal her, I am calling on You. I cry out to you in my pain. More than anything I want her well. I know as much as I love Emily You love her more. Help us to understand why this is happening. Let me be the mommy she always needs. We love you so much Jesus! Thank you


Sunday, February 7, 2010

in the hospital

This will be a quick one.
We are back in the hospital. Emily's seizures have been increasing everyday since we stopped the ACTH. We have upped and changed all of her meds and it just doesn't seem to be working.
The day before yesterday she had 20 , yesterday she had over 16 so far its 3am and she has only had 1.
I think she is cutting teeth and maybe, just maybe, that is the explanation for the dramatic increase.
She also started this new thing, I don't know what else to call it, she blinks really fast and straightens out her arms. We thought they were seizures but she did it 3 times on the eeg yesterday and it did not show up as seizure activity. We are waiting to talk with the dr in a few hours and see what he says.
He wants to start her on vigabitrin (sabril) and so do I. Hopefully we can do that soon. I will try and update later today.
Please continue to pray for my princess.
Thanks

Thursday, February 4, 2010

good and bad






This past week has been busy and full of good and not so good stuff.



Lets start with the good shall we.







We finally got to go back to church for the first time since the end of November. Let me tell you how much we missed everybody!! Our church family has been playing a huge roll in our lives since Emily was diagnosed in Dec.








From hospital and home visits, cards and emails, phone calls and prayers, gifts cards to the grocery, fixing our furnace, yummy meals, thoughtful prayers, and an amazing love offering they have been such a blessing to our little family. They even showed up days before Christmas with arms full of Christmas gifts for Emily! They got her several outfits and a wonderful high chair that is appropriate for her now.
.







So needless to say we missed them so very much. Emily is so loved by so many.
We cannot thank you all enough!!




On Monday Emily started occupational and physical therapy through first steps. She hated it! Right now they are mainly stretching her and working on head control. I really like the therapist and eventually Emily will like them too. Her leg muscles are so tight I never thought to stretch her legs. I have already seen an improvement in them.




This past weekend we had a "family" game night with some friends. We are so close we are just family now :). We had so much fun! It was so nice to get out and enjoy ourselves for a little while. I have to show you one of the hats that Lynn made for Emily. I sent Lynn an email asking her if she could make Emily a hat that I can clip a flower in for Easter and she made her 2 hats in one day. She is very talented!!!



I love those cheeks!!








Onto the not so good stuff.



Emily's seizures have increased daily since we stopped the ACTH injection, in turn we have upped her topamax dose three times and it is not seeming to help anymore. On Tuesday she had 16 that we saw or recognized so I called the neurologist and he started her on Klonopin and yesterday she had 11. It has decreased her seizures but she has lost any muscle tone that she had left. Every medicine has a different side effect and so far we have been very blessed to not have had as many side effects as she could have had

We are still waiting on the referral to Cincinnati children's hospital. Hopefully we will hear something this week.

Sometimes I think this is all too overwhelming but honestly there is nothing I wouldn't do for that little girl. I love her more than I ever thought I could love.