Fundraiser Time!

It's Finally here! Tomorrow is the big day, and Im at home pretty much freaking out. So many things to do and try to prepare for, then of course snow... I can't do anything about the weather, but we have been working extremely hard getting this event together. Round of applause to my friend and other mother of an infantile spasm baby Lucretia Stallings. She spent TONS of time getting this event ready.  I have spent my day going through all the many donations I have received and kid words from family and friends. How blessed am I? I received a gift basket from In-n-out burger... kind of want to keep it, but they put a personal letter to me telling me how they are excited for this event and that they are happy they could help in anyway to make someones life easier. This was a personalized letter! To me, using Zoey's name, and signed. Makes me remember that this is the season. People are good. That makes me excited for tomorrow. Hopefully we will see everyone there! We have so many fun activities and it really is geared for family. Santa will be there and my sister in law has kindly helped and will be taking pictures of kids and santa too. I really do hope that if you can come you will. It will be the best kind of service, food, entertainment, shopping and Santa! Just by showing up and getting a ticket, you have done service. This is my last post and I want to make it count. There is no easier way to give a donation then right here on my blog. Right hand corner there is a button to donate, click and go!  Hope to see everyone there!

Thoughts

I have been doing a lot of thinking this past week of my little Zoey. It's been 6 months since her diagnosis and I have been reflecting on how my feelings and emotions have changed since then. When I first found out about infantile spasms I was crushed. All the dreams I had for my girl were gone. I read story after story of parents with children with infantile spasms and how their kids are so dependent upon the parents for the rest of their lives. Getting dressed, eating, changing diapers on your adult child. 50 to 1 the stories were heartbreaking not uplifiting. I stopped reading stories. Only recently has my mindset changed.

I can't tell you what has exactly changed, but my heart is changing. I look at my beautiful child and I see her absolute love for me. She will stop and stare at me, then pull out this beautiful toothy grin. A grin just for me. Because I'm her mom. And because I'm her mom I will do anything to make her happy and enjoy her life. If making sure she has a clean bum at 30 years old, then so be it. Zoey didn't ask for this, and while I take care of her, she is the one living this life. As her parent I am going to give her the best and happiest I can. Just like I want to do so for my Joseph. I have a connection with her that let's me enjoy her smiles and laughs. For now I will cling to that and be happy. I know my fears and worries will always be there back in my mind, but those will be pushed back and I will be happy! For those struggling with same emotions, just hang on. It does get better. There is always hope. Feelings change, emotions change, and happiness comes.

For those who want to meet my special girl and he protective brother, come to our fundraiser this Saturday at 3 to enjoy shopping, food, and entertainment! Deseret peak indoor arena in tooele, ut!
Santa will be there too!

Thankful

I never did get into the everyday post something your thankful for. I wish I was dedicated enough to do it, but I can't seem to keep up. Saying that I have much to be thankful for this thanksgiving. My number one thankful thought is that my baby is still seizure free. I can only pray she keeps that going, but instead of worrying about it I am trying to enjoy having my happy baby. She is such a different baby! Its been almost 6 months of hell and I had forgotten just how cute she is. After all she has been through I can't blame her for being grumpy, but she isn't anymore. She wakes up happy, watches her brother and cousins and stays happy all day. She tries to chat, she smiles, laughs and is finally enjoying life. It is so nice to see her happy and smily again! Her favorite person is her big brother Joseph. Those two started out rough, but they love each other so much now. She lights up when he comes in the room and he wants her to sit with him, sleep with him, and always be involved with her. I'm grateful that my kids love each other, she will need a big protective brother down the line Im sure.  Zoey is learning and is such a clever little thing. She sits up on her own all the time now, and HATES when she is not. She is a big cuddled and wants to be involved with whatever is going on. She has just started trying to get her little legs up under her, but also seems to want to be walking so we will see which one comes first! One of my favorite things about Zoey is her hair. CHAOS! Bless her she looks like one of those old troll dolls with their hair sticking straight up! Its not thick enough to put in a bow, but long enough it just sticks up! Its so funny, and her big blue eyes melt you! Im hoping to bring her and big brother Joseph to the fundraiser so everyone can meet this special girl, but please no touchy! She still has low immunes, but should be getting them all back soon!

I also wanted to say how thankful I am for my Josey. He is such a clever boy. Sometimes too clever. He loves life and already throws tizzys like mommy USED to! His favorite thing is chocolate.. I thought I was bad, but this kid will sniff it out wherever you try to hide it. He also is an outdoor, bug boy. He is scared of spiders, but also has an obsession with them. I have trained him well with a shoe how to make them disappear, but daddy doesn't like that lesson. He will be 3 years old this December! I cannot believe he is that old, yet in someways he acts older. He is such a character and loves to be silly. He constantly makes me laugh and wants to help me with EVERYTHING.

Then there is my James. We have had a rough couple of years, but he is my constant. He is always there for me, and makes me feel needed. We joke, argue, and laugh together. He is my best friend! this year has been especially difficult with Zoey and no sleeping, but we got through it and still love each other! That is something to be thankful for sure. Almost 7 years of marriage. Only eternity left and that is also something to be thankful for.

Lastly, is family. I will never be able to repay how much my family has done for me. Both mine, and James'. So many talks of hope, nights of getting a turn at sleeping, and letting me cry. Not once has any of them complained when I have asked for help. How lucky I am to have such people by me.

Now for my reminder for all! Yes Tooele is a bit out of the way, but it really isn't that bad of a drive. This fundraiser is for a good cause! Not to mention you will have shopping available, food, entertainment, and prizes! Thats much better then spending an hour in the parking lot at the mall.. Not to mention the fact that Santa will be there! You can't miss this! All the information is at www.isawareness.weebly.com. Don't forget you can donate through my blog page or go into any zions bank and donate to the Zoey Burke Donation. Thank you to all who have helped me out with donations, both money, and items for our raffle/silent auction. Have a very Happy Thanksgiving!

BRING IT!

I am so very excited for Infantile Spasms fundraiser!!!! We have some very awesome silent auction items, as well as some very cool and perfect items for the season gift baskets and gifts for our raffle! Just a couple of things that will be present is 2 tickets from Las Vegas to have a tour over the skies to visit the grand canyon! The tour takes to you to many sights like the hoover dam, plus once you land you will have an additional tour set up for you that includes lunch and sights of the south rim of the grand canyon. We also have a golf lesson with an instructor who has been on the news many times for his amazing abilities and personality. Movie tickets, hotel stays, food, waxing, so many things that are perfect for the holiday season. PLUS a night out with the family!!! Who can go out a feed a family AND pay for a show for only 25$??? While you are out having fun, your also helping children have some hope for the future. Giving family hope and answers instead of frustration and questions.  Just so we are clear with whats going on all day:

3:00 Doors open

3:00-6:00 we will have dunk tanks, bouncy castle, pie eating contests, and raffle prize give aways! There will also be booths up ready for your holiday purchase. Some of the vendors we have are: Chocolate, Norwex cleaning supplies, and Jewelry! For the little ones we also have face painting and gingerbread house making stations.

6:00-6:30 Speaker from Primary Childrens to speaks about Infantile Spasms.

6:30-8:30 Hawaiin Luau Dinner and Show! (includes hula dancers, fire breathers, knife throwers)

Where can you get all this entertainment anywhere else?! Please come and support our cause. I am going to be bothers everyone until you all agree! And just so everyone knows, tooele isn't THAT far away! haha It is 30 minutes from Salt Lake. If you want to buy your tickets now, you are more than welcome to. My fellow Mom in this event has set up a web page to buy tickets. You will be able to buy them at the door too. Her web page is http://isawareness.weebly.com/our-events.html.

As always my page is set up to receive donations!!! Thank you to all those who have donated already and for those helping out with our gift items. This has become a HUGE deal and we are very excited to be part of it. To top it all off we will be able to have a spot on the KSL radio stations to tell even more people about this event! WAHOO!! We are still taking any vendors who want to sell items there, and also any items to give away for raffle or silent auction. Spread the word friends!!!!

Easy days... Mostly!

Zoey has finished her medicine completely! No more injections for my baby girl, happy has returned to her little face. What a gorgeous  face it is. I cannot tell you the difference her being seizure free AND off meds has made. She giggles again. She chats and blows raspberries. She smiles at anyone passing by and loves to be cuddled and just stare at your face. My little miracle is back!
We are still staying secluded until January to make sure as much as possible that she doesn't get sick, but we did splurge and dressed her up for Halloween and went trunk or treating and then trick or treating. She loved being out! Poor thing hasn't seen outside much and LOVES it!  We dressed her up as Minnie mouse and Joseph was ofcourse batman. What a good little barman he was! He is enjoying having his sister back too. He wants to hold her again and tells me he loves her all the time. He especially likes screaming in her face which for whatever reason she thinks is funny. She just grins whenever she spies josey walking by. Those two will have a special little bond I think!  In almost everything zoey is back to being perfect... Except night. She is a party pooper with the night. She is quite happy to be awake and chat to me, I on the other hand am not. But she does make some cute faces for me even if it is 12 am, 5 am, 7 am.....
On an update... I'm still waiting for donations! I understand its getting to be the busy time of the year, but please even a dollar will add up!  We are trying to make this fundraiser a good, fun family DAY! That's right, a whole day of fun. We will open the doors at Deseret peak indoor arena at 3:00. From 3-6 there will be fun carnival type games for kids to enjoy. Bouncy houses, dunk tanks, and much more! For our adults, we have booths to do some shopping! We have a chocolate booth set up and are looking for more volunteers to help us out.  It can be anything! Jewelry, scentsy, maxi skirts, food, clothes, whatever! If you are interested or know of someone who can help, message me so I can get you set up! We are also looking for items to use in our raffle and/or silent auction! Again it can be anything.. free photography session, blankets, movie tickets, clothes, gift cards, anything! Not to get you too excited but it looks like we have a snow blower or lawn mower brand new being donated and also a grand canyon tour package! But we need more items!  Again if you or know anyone please contact me! 630pm will start the hawaiin luau with food, hula dancing, and fire breathing dancers for our entertainment. To enter the building it will be 5$ a person or 25$ a family. That will pay for the food and entertainment. Please help us out, its for such a good cause. Zions bank is where you can go to donate to zoey Burke or PayPal is up and running, just look up my email. Bradiburke86@gmail.com. thank you everyone for helping the cause and reading my motherly babble!

Oh happy day!

Officially happy! Zoey is being tapperd off her ACTH. Her last day of meds will be the 29th! Today we had her EEG to see if she had anymore hypsarrythmia. The results have come in and she is cleared of her infantile spasms. That is what we have been waiting to hear the last 3 1/2 months! Now she can hopefully be on the road to recovery. We will be continuing the physical therapy and trying to catch her up in her motor skills, but even then she isn't doing too bad. The only worries now would be a relapse, also the Dr. Did say she was having a different type of seizures during her eeg. This means she could have epilepsy later on. We did know that there was a chance of that anyway so for now we will celebrate that this horrible condition is over. Moving on with life, and relaxing just a bit. The last 2 days have been better, she still isn't sleeping at all, but she has been smiling and laughing and reminding us who the real Zoey is. I hate ACTH. The side effects are horrible and I have never been so tired and worn out. However, the fact that I don't have to see her in pain with seizures is very worth it! 
Plans are coming for our infantile spasms awareness fundraiser! We are still looking for a final location, but plans are in motion. The luau is a definite. There will be food, hula dancing, and fire breathing. We also would like to do some type of raffle and silent auction. Anything that can be donated to help with the raffle and/or silent auction would be appreciated! I will be setting up a place to donate funds tomorrow and will post the information on the infantile spasms event page on facebook. It is a public page so if I haven't added you, you should be able to get on without problems. If you can't locate it send me a message with your email and I will invite you. Please help us spread the word. We are excited to do this and want it to be a fun and an informative night. We can't do this without you all helping us too! Tell family and friends to ask work for sponsers or donations. Share on facebook! We hope to advertise in newspapers and radio. We want this to be BIG! Thanks everyone for thoughts and prayers. It's been a long time coming, but has finally paid off! Thanks to everyone!

Just keep swimming

Finally happiness! Zoey has been on ACTH now for almost two weeks and hasn't had a seizure since Tuesday! ( knock on wood) it has been great to not have to see her suffer anymore. Although giving injections hasn't been so fun, she handles them like a trooper. The down side of this new med is cranky, no sleepy, high blood pressure baby. I will still take that over seizures anyday! The plan is to wait a little longer then get another EEG done to make sure we are good. Then hopefully we will be lucky and not have a relapse.
On other news, the awareness week is a go and we will have the luau! So excited! I was able to go to my old work and talk to the Dr.s about infantile spasms and give them information to help diagnose and treat. It went really well and I need to start calling around for more places to go. I was so happy a fellow IS mom was able to come and help me with it and have another perspective!
Also as a proud mama, Zoey got 3 teeth all at once! Painful, but so cute.

The rollercoaster

Well a lot has happened, yet at the same time not alot. We finally had our meeting with the Dr. It went well, but since then has been frustrating. Zoey's seizures have gotten worse. Not as bad as the beggining, but instead of 1-2 episodes its more like 3-4. After meeting with the Dr. We decided that a change of meds was in order. Vigabitrin has run its course with no real success and there isn't any point in continuing with it. We will now try ACTH. It's a strong steroid which means I will be going back to cranky, swollen, high blood pressure checks baby. Plus a new fun bonus of giving injections twice a day! All my schooling is coming into play at least!
Once that was decided, it was just about getting the meds. That is a big deal apparently. My insurance likes to complicate things a bit so almost 3 weeks later we still have none of the new meds. Lots of phone calls and complaining and its not really gotten anywhere. Hopefully next week will be the week?
We also talked to our Dr. About getting another MRI done. I have a couple reasons for wanting this. After talking to many families I have found that despite the Dr.s protocol of doing one MRI to diagnose and then wait until the age of 2 to do another one, a lot of things get missed. We also had a family going through the same thing and they had another MRI and found out their baby had a blood clot in his brain. Not something that should be overlooked either! I have never been comfortable with waiting until zoey was 2 or even 1, but when I found out about the blood clot we scheduled immediately.
After a long day at PMCH, we got results. No blood clots, but there is some deep tissue injuries. That can happen for 3 reasons. 1. The seizures are creating the damage. 2. Injury at birth ( which we don't think it is because her last MRI was fine). 3. A metabolic disease. She was origionally tested for some diseases, but they cant cover all of them so it was just the most common ones. Now we will be going in again on Friday for more blood work to get more info if it is a disease. I asked the Dr. About long term effects, and there shouldn't be any problems. So until we know if it is a metabolic disease we treat with ACTH and see what happens.
Onto happy news. Zoey rolls over on one side all the time and on her tummy she will push up on her hands. Her little legs kick and she is starting to try and get her legs up under her. We are now working on getting her rolling on her weak side and also to get her sitting up. She is still a social little thing and would much rather look at faces and people than toys! Hopefully soon things will get resolved!

Yawn

It's been awhile, I know, but not much new has happened until today! Zoey has been enjoying her physical therapy and I can't believe how tired she gets from doing her exercises. She is becoming happier on her tummy and today she rolled over all by herself! Beautiful girl is still struggling with the seizures, but amazingly she is still learning and not getting worse. We see the Dr. This Friday and that will be another big decision time. She is at the highest dose and has been for 3 1/2 weeks. Not a lot of improvements. She tends to have only 1 episode still but sometimes it lasts longer than a minute or two. While its great she's only having one episode, I thought we would be done with this part by now. Night time has become horrible again. She wakes up from seizures and will not go back to sleep, if she does its only for a minute or two. Silly baby. Love her, buy oh I'm soooo sleepy. Back to the new born stage is what it feels like. Only I have been doing it for nearly 8 months! Keep her in your prayers! I feel like we are almost there just not quite making it. I'm so proud of her hard work and its paying off. Yay Zoey!

Sleepy time

Alright so first off, seizures are still there... We are having good days and bad days still. Not much new. Night time still seems to be the hardest time for her and no one knows why. The doctors did increase her dosage again so we are playing the waiting game once more to see if this higher dose will work. It will take another week or two to tell the difference.
Today was her first day of the physical Therapy. Boy is she gonna work! She did great, but she will be working now! I have been given some exercises to help her WANT to be on her tummy. I now know the reasons behind  why it is important to be on her tummy. Bless her she hates it. Tummy time is important because it teaches the babies to put weight on their opposite shoulders as they try to reach for toys in front of them. This then leads them to reaching and scooting and eventually crawling. So tummy time it is! But for Zoey we will be doing modified tummy time. We are also working on getting her left arm to come out and get weight on it as well so she can use it as much as she does her right hand. The other exercise is to get her interested in her toes. Again a modified version. She doesn't actually lay flat on her tummy, instead I hold her kind of crunched up and bring her toes up to her line of vision and let her just reach out a hand. She already loves her toes!  She was wiggling them and touching them so I think that exercise will be fun for her. Her modified tummy time will be getting her resting on an arm rest and on her knees, and then using her arms to keep her up. She is higher up so she will be able to see whats going on around her without having to look up really far. She doesn't like that one so much, but she was doing so well I am excited for her to keep going!
Her EEG was supposed to be today, but because her seizures are still going on, we had to cancel. No point in going in for them to tell me that she is still having seizures.. So the plan is to wait...again and see if we can get them stopped then call and get an EEG done. Hopefully it will be soon. Wednesday she will have another therapist come to check her vision and see if there is anything we can do to help her with her tracking. I am not sure she needs help with that one. She has good days where she seems to track just fine, but every once in awhile she will be grumpy and not want to do anything. All in all things are going ok, and at least I am feeling like progression is happening versus just waiting for anything to happen. She is so happy to be with people and to chat to everyone.. already a social girl!

I have wondered wether or not I should post videos of Zoey going through her Infantile Spasms. I don't like seeing these videos because she is not happy. It's what I see everyday. Heartbreaking.  Watch the videos at your own viewing risk. The reason I have posted them is because Dec. 6-10. 2013 is infantile Spasm awareness week. With that, me and some other parents with IS children are grouping together to create a fundraiser to give the money to research for IS. One of the most frustrating things that I hear from dr.'s is," We just don't know enough about IS." They don't know enough about what causes it, or how to treat it. In order to get the help that these kids need, we must get this information out there. Dr.'s need to know how to diagnose it. They need to know how to treat it. They need to know how very serious and dangerous it is to leave untreated. I will give more information as it becomes available. Any donations, or help to find ways to get the word out please contact me. If you would like to learn more about IS here is a wonderful website to check out: http://www.infantilespasmsinfo.org

Waiting...

I have to say waiting for things to happen is the hardest part of this whole ordeal! Zoey has been doing well. During the day I hardley see any seizures. If she is having them, they are small enough I'm not seeing them! That's a good sign right?? Then the night comes.... Without fail, the last 4 days she has had painful seizures at 10 it 1030 at night and just cries. Having usually about 10-20 seizures. That number is actually an improvement for her, but that doesn't make the situation any more comforting when your babies crying, and her eyes are rolling back. Freaky to watch heartbreaking to hear and see.
After all that though she is mostly in a good mood! I can get her laughing and she loves to chat to people. She finally got accepted to start her physical therapy and I'm hoping that will help to get her back on track with  happy baby. She still doesn't roll over, but she is now trying and is close! She still has left side weakness, its better but she still doesnt want to reach for toys or even hold toys. She hardley does that with her right hand, but its much better. All things therapy will help her with so I'm happy with that part! Future... I'm so confused about if the meds are working. She has been on this med for 2 weeks now. We were hoping to see results.... And while the day is better, I am worried about the night and her catching up with her seizures at night. I keep hoping this day will be the end of them, but night comes and ruins it. We will be going in on Monday for another eeg and meeting with the Dr. You can tell when your stressed out when you start dreaming out her eeg results....
In other news, we had so much fun going to st. George and seeing family. We still have to be careful with germs so we didn't get to see everyone, but a change of environment was nice. On a bad note, she got double ear infections... Hopefully that will clear up with no problems. Poor baby has more medications in her system. I hate it! This morning my two babies were so very cute together and makes me feel like everything will be ok. Joseph is such a good big brother.

Crapy days

I know I just blogged, but now I find that sometimes blogging clears my head and let's me think about other things... Sort of. I came away from that Dr. Visit feeling so optimistic, and then more crap happens. My poor little girl, she hasn't had her painful seizures for weeks now, but last night she woke up with some really nasty ones. I cannot express how painful it is to watch your child go through these horrible, painful things and all I can do is watch and hold her. I should be able to help her! Mother knows best right? My heart just breaks. I felt like at least those had gone away, but no they are still here. Then today came. All day she has been good. Here and there she would have a few but mostly ok. Then we sat down for dinner. BAM. A head dropping big seizure. While better then the painful ones, not easy to see her collapse in half and eyes roll. Over and over and over. About 40 times in the space of 30 minutes. This is when I panic. Why isn't the medicine doing ANYTHING??Shouldn't it be doing something? So I made the rounds calling people to figure out what or if there was anything to do. Wouldnt you know it.. the old neurologist is the only one to answer because she was on call... Little bit awkward. Pretty much told that nothing could be done this weekend and wait to talk to my neurologist Monday.. bitter? I would say yes. So now I am waiting to go to bed and see what my weekend brings. Totally discouraged and wondering what is really going on with Zoey that we just aren't finding. Hard being a parent. Such love for a baby I only met 6 months ago.

New Dr. And hope!

We have had a little bit of drama the last week or so. We have been in contact with another family here in tooele, going through the same thing we are, at the same time too! We have also been using the same Dr. Which is good until both patients have issues with that Dr. So both kids are taking vigabitrin. Their poor little baby was given the wrong dosage. Not off by a little either. While zoey was given a dose that was normal, they increased it too quickly. That led to a bit of panic for us because when you lose trust in your Dr. It's very hard to get it back. This is my child's future. This will determine what her quality of life will be. What was frustrating is that this Dr. Wasn't really my Dr. The Dr. We started out with left for a month and didn't bother to tell us, or let us know who we could go to instead. After a few phone calls we finally had another meeting set up with a highly.recommended Dr. At primary's.
Zoey's seizures have not stopped. She has been on vigabitrin for a week now and I really haven't noticed a huge difference. She hasn't had any painful ones, and her head dropping ones aren't as frequent. Other than that... She is still having 30 or so a day. Not very reassuring and since the med is so hard on her its frustrating to not see results. Yesterday we had a fun filled day at the hospital. Zoey magically stayed asleep even after I got her out of the car(that never happens)! We had to run some more eye trests, to measure her retina and also one to check how her eyes were connecting with her nerves and brain. The first test again my baby stayed asleep! The second test... Not so lucky. They have to numb up her eye with some drops, no idea how she slept through that. Then they have to put this contact lens in her eye. It is not a small contact and looks freaky! That was when she had a good old fight with me. I won and we finished the test quickly and I'm glad that one is done!
When we finally got to meet the new Dr.  It was the most optimistic I have felt in a long time. Zoey is doing everything she should be. Very social, reflexes are doing what they should. Her little arm that has been tucked up by her side is now moving much better and she is wanting to move it. She is not rolling over because bless her the Dr said she has too much weight! She doesnt know how to account for the extra chub she has going on. Love those steroids!  The only thing the Dr is worried about is that she needs to use her mouth to try and chat more. She chats alot, but only in squeals and grunts. The Dr. Wants her to babble a little more. The. Other thing that we aren't sure about is startle seizures. They aren't sure if it is part of the infantile spasms or the start of her other epilepsy. I really hope its not startle seizures... They don't sound very promising from what I have researched.
All in all she is learning and is happy. They said it was a good thing that she is able to learn things while still having seizures. This med can take the full 2 weeks before it works. She may have 30 seizures one day and none the next so it will be a wait and see. The plan is to wait until our Aug. 12 appointment and EEG. And figure out the next move, if med isn't working. She also start physical therapy on the 6! Now all I need is for Zoey to sleep at night and things will be so much better! She stops the steroid on Sunday and I hope that fixes the problem!

Ahhhh!

That is exactly how I feel. Ahhh! The process of trying to determine what medication to try next has been exhausting and scary. The pressure of trying to choose a medication that is the best one to stop her seizures has brought on sickness, crying, tantrums, and sleepless nights. I'm not talking about my 2 year old either! After speaking with the Dr. And also fasting and trying to get advice from other families in this situation, we decided that vigabitrin is our best bet. We risk the tunnel vision, but we are hoping that she won't have to be on it for long and her eyes won't be affected. So we are on day one. I would love to tell you the results, but wouldn't you know it, I got sick. Since Zoey still has immunes that are low from steroids, she went for a stay at grandma's house. I miss my little baby! Amazing how such a little person has such an impact on the whole house. I am getting second hand knowledge about Zoey now. What I do know is that so far she still has them. But it hasn't even been a day yet so hope is still there. I want to give this med a couple weeks to see if there is improvement and if not we will re-evaluate again about which med to try. Zoey loves kissy noises and whistling and will squeal with delight. Such a happy kid through all of this, I love that baby so much. Even Joseph told me he wants his sister to come back! The good thing about Joseph and I being sick, is we get to spend some time together and have some fun with each other alone. Love my kiddos!

Meds

Can I tell everyone how much I hate this! Sooo Zoey has been on prednisolone now for 5 weeks. 2 of that on the higher dose. While it seemed to help a little it has not stopped her seizures. Now we have to decide what to do next! At first James and I both agreed to go to ACTH.  Its a much stronger steroid that a lot of people have had success with. Also it has the same side effects as what she is already taking. The other option is Vigabatrin. Still a successful med, but can create tunnel vision for kids. Knowing that ACTH seemed to be the better option despite being ridiculously expensive. Like 120,000$ expensive. Talking to the neurologist she told me that those kids who started on a steroid and went to vigabatrin and the other way around as well had a success of about 75%. Seems like good choice right? Now here's the fun part. Vigabatrin is 2 weeks initially, but then can go for 6-9 MONTHS. where as ACTH is only 2 weeks. So now we are stuck.. We have been told that we need to get the seizures to stop as soon as possible. Anyway tricky tricky and no clue how to decide. We will be doing another fast this weekend and try to figure out what we have to do. I have never felt as emotionally, physically drained as I do now. Such lows, its so hard to stay positive. Zoey had an aweful cluster of seizures last night that had all of us freaking out. They lasted longer and looked horrible especially when she looks like its painful! Cannot wait for sleep! At least with sleep you can feel better. We go on Monday for a meeting with the neurologist to decide what course to take for miss Zoey. Wish us luck!

Team Zoey!

Stressful week! As the Dr.s gave the ok to give her a higher dose of medicine, it also led to a lot of blood pressure checks. Normally I am supposed to get it checked twice a week. However, when I went in her BP was too high. She went from being around 104/ 65 to 110/75. Freaked me out! They had told me they wanted her 100/55 or below... So panic totally set in. 
After being extremly frustrated with never getting the BP checked correctly I got a cuff at primary children's and took it to the hospital here in Tooele. Low and behold the cuff doesnt fit their machine... At least this time they found a cuff that was her size and put it in a place specifically for Zoey. I have always said how bad the tooele hospital was, but the ER nurses have been so good with us, I am changing some opinions.  Zoey had a really high BP that went up to 135/93. Really not good, so we had to stop the dose for a night( which was perfect because after 2 nights of no sleeping, I finally got 5 hours!).  The Dr.s put her back on her old dose and we had to go in and check her BP every day. BP went back down to 110/80 ish.
Finally today the nurse we report to, met with the neurologists to go over Zoeys case. They told me that Zoey's BP was still normal while on prednisolone and to increase the dosage again. So saying all of that... I am happy. We had a fast on Sunday, that we specifically wanted. 1. Was her blood pressure would be ok. 2. That she could stay on this medication, because even though she is grumpy and doesn't sleep, it is still the safest, least damaging med she can be on. So the fasting and prayers are working! Please keep them coming, and another fast on Sunday is planned for those who want to.continue to help. We wait and take BP this week again and check in on Monday for another evaluation. So our prayers and fasting will be again for her BP and also for this med to kick these seizures out. We are on week 4 of treatment and if I remember correctly she can only be on this med for 6 weeks. 

Please keep praying for Zoey! She is still smiling and loves to be held. And loves to stand in her bath. Not sit...just stand. What a tough kid I have! Joseph is loving going to the hospital. He already has all the nurses wrapped around his finger. He gets teddy grahams everytime he goes in. I always get reminded in the morning that we need to take Zoey to the hospital!

The check up

Today brought on a lot of crying from Zoey. She had to be sleep deprived to have an eeg done today. We had to keep her awake an extra hour and then wake her up at 4:30 this morning. For a kid that is already lacking in sleep, it was hard to keep her awake.
On a good note Zoey's EEG looked better than it did before and she isn't having as many seizures. So the medicine is working just very slowly. She is on the highest dosage now if prednisolone. She has one week in this dosage and then that's all she can have. So now is when prayers are needed! We really don't want to have her go on another medication. The harder it is to stop the seizures the harsher the medication is. Prednisolone isn't a pretty medication to be on so we would like to see her just be done!
We are planning to do a family fast this Sunday. Anyone wanting to join us is mire than welcome! We want these seizures to stop! Please keep her in your prayers.
On a good note, primary childrens gave us a blood pressure cuff to use for Zoey at her check ups! She had it checked today and although it is a little elavated, its not enough to stop the med. I have one more week then I must check in and the Dr.s will tell us what to do then. I feel like we are going in the right direction!

I don't get it!

So we still don't have a lot of new information. All we know is that while the medication has slowed down the seizures, they haven't stopped. Yesterday I was told to increase her dose up 5 mls. I already feel like she is taking so much and her personality has changed I was hoping we wouldn't have to. Tomorrow she goes in for another eeg. My poor kid is already sleep deprived, but I will have to wake her up at 4:30. Long day ahead! Zoey is still doing well though. She doesn't sleep well at night and hardley sleep during the day because of the medicine, yet she is still smiling. She loves to be cuddled and if she had it her way, would stay in my arms all day and night. Unfourtunatley for her, she has a brother that doesn't understand what she is going through yet and wants play time and mommy time. Very difficult to balance time when naps fos Zoey are so rare! I hope tomorrow we can maybe get some idea of what to expect if this medicine doesn't work.

I have learned some new worrying things. I guess there have been multiple families that have been diagnosed with this, that have the MRI done and were told it was fine, only to go and get a second opinion and find out there were abnormalities. I put so much faith into the dr.'s that this has totally freaked me out. We plan on asking to get an additional MRI to double check. My last complaint for today is how ridiculous pediatrician offices have been. Pediatrics is the care of children right? Babies to 18 year olds. So why when I go in to an office to get a blood pressure check do they not have the right size? No baby size at all! I can understand a family practice, but pediatric? Don't get it. I went to 2 different  pediatric offices and also the hospital and none have them. How do hospitals take newborn BP? Then when Zoey has an abnormal blood pressure that is extremly high, they didn't even re check it. High blood pressure for my baby is anything over 100/50. So when 142/78 shows up shouldn't that make you worry? Instead they sent us on our way. Glad my mom has patience because she had to drive around trying to find someone that could do her BP correctly. Sad thing is that that dr. Was in draper not tooele!

Now that I have that venting session out of the way.... things are ok. Zoey still laughs and smiles. joseph gets his fill of mickey mouse. James and I are somewhat like zombies, but we are enjoying these kids. Once you get the routine down it's not so bad! Hopefully tomorrow we will have some information on what to expect!

The first days.

What a week! Trying to let it all sink in, at the same time wanting to forget all about it. As of today Zoey still is having seizures. That can be normal, sometimes it can take weeks to get the right dosage. It still isn't fun on the parents though! The hardest part right now, is to know what symptoms I should be worried about and which ones are part of the steroids. Trying to get her to take all her meds is a trial! We cut her 15 mls into 7 1/2 twice a day. Because she has acid reflux, giving it to her in her milk is a no go... She will spit it straight back out. We are now giving her oatmeal and veggies and fruit with the meds. She can take the solids without throwing it up. So a lot of coaxing, but it's working.
The doctors told me that the steroid would make Zoey grumpy. I assumed that ment fussy. We found out yesterday that it goes beyond that. Maybe it was a mix of meds, wind, and boredom, but Zoey had a teenage size hysterical fit.  For an hour straight there was nothing but crying and screaming. No bottle, binky, or singing would calm her down. I tried everything I could think of. I gave her a bath, changed her clothes and diaper. It wasn't until a prayer and a lot of time did she finally calm down and fall asleep. I am hoping that this doesnt become a daily thing. I cannot imagine trying to deal with that and take care of Joseph. Along with all the other house things I gotta do. It was exhausting!
I also found some new struggles for me to deal with. The unknown is still hard to accept and depending on the day, my mind likes to think the worst, or be extremely positive. Most the time I feel positive and can be happy. However, my new struggle is other babies. Babies that are close in age and doing all the right things on time. My heart just breaks thinking that zoey might not ever learn to walk, or talk. Maybe not even roll over. These thoughts tend to take my positive day and ruin it. I know I have to find a way to get over it, I wouldn't want babies to be in this same spot, but it is hard to see. That's why the unknown is so difficult. Zoey could be just fine and all my worries are for nothing. But she might not be fine and I can't seem to shake those nasty negatives off just yet. But I'm working on it..

Zoeys Beggining.

I decided to write a blog dedicated to Zoey and what she is going through. I thought I would do this for a couple of reasons. 1. It would help me to get it out and not have to continue to share this painful story over and over again to everyone. Instead I could share my blog and let them read about it. That saves me some heartache and still makes sure those who love us know what is going on. 2. It would help me down the road if someone else is going through this I can use it to show them that others feel the same way and that how they are feeling is normal. 3. It keeps me on track with exactly what happened to her from day one and throughout her life in case doctors ask, I can give them specifics.

I should start at the beginning. Zoey was born 10 days early. I never thought I would have an early baby. Joseph didn't want to come out ever, so when I had contractions I was shocked. She was yet another miracle baby. James and I struggles with infertility for years, and had to be on medication to get our Joseph. So when I got pregnant with Zoey with no meds and the information that we would only have 2% chance of ever getting pregnant on our own, I was shocked. My pregnancy was normal and everything went smoothly until delivery. When Zoey came out she also inhaled some yummy baby poop. That is not unusual. The nurses did their best to get it out of her lungs and she came with me to my hospital room. Later that evening, we wanted some sleep. I had been having contractions for 2 days previous and didn't get much sleep. We sent her off for the nursery and even though I did it for selfish reasons, I'm so thankful I did. That night her oxygen levels fell and she was admitted into the NICU. She was okay, but her lung had collapsed because of the poop that hadn't gotten cleaned out. However, her case wasn't too bad and there were amazing nurses who watched out for her and I will never forget their kindness. We spent new years with zoey in the NICU, but got a wonderful surprise New Years Day when she got to come back to us in our room for good. I have no idea if her not being able to get the oxygen she needed led to her spasms, but I do feel that everything was done for her.

Once we got her home she was a bit of a naughty baby! She was grumpy and seemed colicky and spit up everything she ate. She was still tiny. She was born 7.5lbs. but didn't gain weight to quickly. The pediatrician wasn't worried because she was proportioned perfectly. I had to assume I just had a small baby! Very opposite to my Joseph who was born big and stayed big! Zoey seemed to do okay. We got her on prevacid for her acid reflux and although she didn't stop spitting up, she became a happy smiling baby. I didn't notice anything different. At about 3 months old, when Zoey would wake up her head would do a quick drop down to her waist and she would pop back up. I remember thinking it was a little strange, but I thought she must be working on her neck muscles and was still tired and couldn't hold her head up that well still. Time continued and I wasn't producing much milk. Zoey was hungry all the time, and I was pumping a lot to get more supply, but it wasn't working. I started her on formula and continued with what I could breastfeeding. After a week or so of formula Zoey started to get painful looking cramps. She would pull her little legs to her chest and SCREAM! then stop for a second and start all over again. I thought she must be constipated because of the formula. These episodes would go on for a minute or so. I went to her 4 month old check up and told the doctor about both things. the cramps and the head dropping. He didn't seem to worried and said she may need to get used to the formula and to watch it.

Another week went by and Zoey was having her cramps again, but this time her eyes would bulge a bit and kind of roll, then go cross eyed. Freaked me out! I told James and we went to the Doctor again. He couldn't see us so we went next door to another Dr. office. I told them she looked as though she was having seizures. The doctor told us that seizures usually leave kids fatigued and not wanting to move. Zoey didn't really do that. So I though it must be constipation and she is straining to hard. That's what the Dr. thought as well so we got her suppositories. That week she still would have the pain even though she had pooped 2 or 3 times. Went in for her 5 month old check up and the pediatrician said the same thing as the other doctor. Didn't sound like seizures. Of course Zoey wouldn't cooperate and never did show the doctors either of the episodes there. Meanwhile, the head nods were getting more frequent. After all naps and waking up, and after feedings, Usually 2-3 times in a row. It was scary looking. Finally, on vacation my mom was looking things up trying to find answers.She came across Infantile Spasms and noticed alot of similarities.  The more we looked at the more I thought I should take her back to the Dr. AGAIN. So this time we spent the week trying to catch her episodes on film. We were able to get both and went to the Dr. on a Friday prepared to make sure Zoey was going to get answers. At first The Dr. was still saying the same thing. Once I showed the video everything changed. I was told to call a fast track number at Primary Children's to get in to the neurology department and get in as soon as possible.

This brings us to the big day. I went in on Monday to get an EEG done. An EEG just looks at the brain waves of the person. Zoey had been on the test for maybe 10 minutes when the nurse came in and said she has Infantile Spasms. We were to be admitted to the hospital and many tests would be needed to decide what type of IS she has. We were extremely lucky to be able to get the tests finished all in one day. She had to be sedated, but once she was she had an MRI, and a Lumbar puncture. She also had to have an IV placed and did blood work and urine cultures. From what I understand from the Neurology team we are working with we want all of those tests to come up as normal. We have the results from her MRI and she is normal. No tumors, or missing pieces. No abnormalities at all. That is good news. Some of her blood tests have come back and those too have been normal. We will be finding out today what the results are from the spinal fluid they took. There are many categories of IS you can gall under, but the one that has the most chance of normal life is called cryptogenic IS. Meaning they have no reasons why the seizures are happening. To be clear, the cramps I thought were constipation were in fact another type of seizure she was having. Those are not fun because you see the pain she is under. The statistics are not great for any type of IS. She will have a less than 10% of being a normal kid with no disabilities. The other 90% is a wide range of being severely mental disabled to only minor disabilities. There is no cure. There is no medication she can take that will help reduce the risk of disabilities. What we are doing now is giving her a strong steroid that will hopefully stop the seizures. Taking the steroid is not great. It makes her not want to sleep and could possibly raise her blood pressure. She is being monitored 2 times a week to make sure she is ok. The biggest thing for her now is that the steroid reduces her Immune system. That being said OCD mom is talking now. I know how much everyone wants to help us. We appreciate it, but at this time we are asking for everyone to NOT come to our home. The Dr. have said no church, no stores, no public places for Zoey for awhile. She will be on this medication for 4-6 weeks and will be low on immunes for 2 months after that. This is why I will not be at church much for the next little while. I will be trying to do my relief society lessons, but will figure out the details on that later. If you are wanting to help us, we could use lots of prayers! We will also be doing a family fast after Trek is finished and anyone wanting to participate with is, of course is welcome to. I will post that information when we know more.Food is not needed for now. I will be all over the place and never know exactly when I will be home or at Dr. visits and Zoey is the same as she was before we found out, meaning I can still do some cooking! Zoey has been an amazing little girl through this. She went through all the tests and barely cried except for her IV.. Poor baby has tiny veins. She has been happy and squealing and chatting up everyone. We are of course hoping for the best and hope she will grow up just fine, however, we are struggling with the odds we face. I know Zoey will grow up happy and know no other way of life. She will be loved and cared for and have a wonderful big brother to protect her. As for her parents we are on an emotional rollercoaster. The dreams and wishes we have for Zoey are on pause for now until she grows and we see what challenges she faces. That is the hardest part, the unknown. IS is not very well known and so we will not have any information of how Zoey will grow up, but we do know that her being in the crypotogenic category is better and that is where the 10% normal category comes from.

No matter what our baby girl is loved. She is a miracle and God wanted her here with us. I don't know why he thinks I'm strong enough for this, but apparently he does so were going to push forward with as much of a positive attitude as we can muster up. I'm writing this blog for you to share with you want. Family members you think may want to know, friends , neighbors. Just know that we aren't a very chatty bunch right now because we are still processing what this means for Zoey and her life as well as ours. I'm hoping that by updating the blogs I can reduce the text messages, and phone calls so that I don't cry all day! We are coping and we are fine. Zoey is happy and Joseph is happy. We know we will figure it out. Keep Zoey in your prayers. Thanks everyone for understanding and being supportive through this.