Happy 2014

I am looking forward to 2014! I know there are good things to come...I feel it!

I am a goal setter. I have all my goals ready to be worked on. One goal is that I want to be more accepting of the life God gave Leah. I want to power through the hard days because we only get a good day about once or twice a month. So most of our days are hard. It's been really hard to get use to this life. It's hard to have Leah come back to us one day and then she is gone the next...it hurts in every way possible. I don't understand it. But this life is what's been given to us and I want (and need to for my own health) to accept it and power through everyday. I can honestly say I do a pretty dang good job making it but I want to be even that much better at handling this challenge.

Leah didn't have any seizures on Sunday. It was such an awesome day. We spent the whole day playing with her. She pulled her arms up to touch toys. She would open her hands and grab on to the toy. Whenever I talked she would look to find me... that was the best part! We feel so blessed to have that day with her.

Today was the day two years ago that we "lost" Leah. I will never forget the day. But I get to choose how I want to remember that day. Yes, I could focus on the loss. But I choose not to. I choose to focus on the blessings! We are so blessed to have her in our family.  

Leah is so physically beautiful but her spirit is also amazingly beautiful!!! Even though Leah can't interact with me I feel her spirit everyday. I know Leah! I am so grateful for this blessing God has given me. Even though she has a broken body her spirit is strong, healthy and very much so alive!!!

Happy 2014!!!

"Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength."

-Arnold Patrick Schwarzenegger.

Merry Christmas!

The reason I haven't posted for the last two weeks is because Leah has had a bad couple of weeks. She got a cold. When seizure kids get sick their seizures intensify and the amount of seizures doubles or triples. Basically Leah didn't come out of seizures for two weeks. She got double the meds and even rescue meds and nothing worked to stop them. She was either seizing, sleeping or majorly drugged. Bad seizures = Bad vomiting. We held our breath every morning when we would go get her because almost every morning her head was in a lake of vomit. I don't mean to sound gross but this is our realty every day. Our worst fear is to have her pass away from aspirating on her own vomit.  It's so emotionally and physically exhausting!

Good news...I got the best Christmas present! When I went to get her this morning she was in her crib just completely bright eyed and alert. She had only two seizures yesterday so that makes for a wonderful day today. Her cold is gone and she looks awesome!!!

Leah will be in a photo shoot with the Salt Lake Tribune on Friday. They are doing a big article on all the kids fighting for the oil. I will post the article.

We continue the HOPE for Leah!

I want to wish you all a very Merry Christmas! Thank you for all your love and support for her and our family!

Our little deer...

My mother-in-law recently gave Leah this book. It's darling and the words fit Leah perfect, it even made me tear up a little bit!

Our little Deer

You twinkle, glow and shine so bright.

You embrace each day with such delight.

You're silly and fun. You always amaze.

You're a gift to us in so many ways.

You fill our home with so much love.

You're an angel sent from up above.

We love, love, love you, little deer.

A hard week...

This past week was a really hard week for Leah and when Leah has a bad week we kind of all struggle too. Lots and lots of seizures!!! She got into many loops of seizures (this is when she seizes and falls asleep for an hour only to wake up into another seizure, this happens about 5-8 times in a row) we have tried many rescue medications for these loops and we finally found out that an extra dose of phenobarbital is the only thing that works. When we give her that extra dose I basically say see you tomorrow baby girl. She then sleeps and sleeps and sleeps. I am mentally and physically exhausted when she gets into loops. When she has had a third seizure in a row I really start to get anxiety. Sometimes she pulls through and doesn't start into a loop and of course sometimes it goes into a loop. By the fourth or fifth seizure they have turned into full blown bad tonic clonic seizures where she foams at the mouth and she is completely frozen. What seems like an eternity when she is unconscious and not breathing... is really only about 15-30 seconds! These are the seizures that make me cry! Unfortunately these loops happened almost daily this past week.

I will be honest the week really got to me. By Wednesday my heart was broken for her! I completely broke down in tears. I also read a story that morning about a sweet little girl less than two years old in New Jersey who didn't come out of a seizure and passed away. Her parents were actively trying to get the CBD oil for her and they worked very close with Governor Christy to try and get medical marijuana legalized. They told him please don't let our daughter die, please help us! This little girls life could've been saved.  I cried and cried reading this article. It took me back to when Leah was in ICU a year ago and she wasn't coming out of seizures and was having such bad reactions to medications. I clearly remember looking our doctor and asking him if Leah would come out of this and wake up and he said so sadly "I don't know". Why do we and these other families have to continue the hell when a plant from nature is there for all of these kids. It can save their lives. I am angry right now at the politician's saying what my daughter can and can't have to save her life. I am so mad that we have to continue to wait for these stupid people on the hill to say whether my daughter gets to live or not. CBD oil is her only hope!

Anyway.... My dad got to my house right when the tears started flowing. He told me I needed to go escape for awhile. Man I would've loved to go to a spa but...come on now I am a mother of four kids. I needed to run to the bank, get gas and go grocery shopping. As I was driving home from the store my husband called me and said "bad news" my boss just got laid off and I got the news that I am suppose to stay home from work tomorrow and that I will be getting a phone call tomorrow. What? I said. Are you serious Chad? Where did all this come from? We didn't see this coming. He continued to tell me that this goes for the whole company everyone is staying home and getting a phone call. I immediately started crying again but only for a minute. I then said "It's okay Chad we can do this, we can make it. We have made it through the worst hell of our lives we can make it through a job loss". We then hung up and all that was going through my head was...we can live off top roman but Leah's medical bills and medical supplies will bankrupt us if we don't have insurance.

Well...Thursday came and all morning no phone call. By noon he received many calls from his associates that they were indeed laid off. He was sick to his stomach for their news and nervous for his news. Later in the afternoon his call came...They kept Chad. We were so relieved but so sad for his friends. Chad works for a Dermatology Pharmaceutical company. He is very happy there and best of all they have awesome insurance. We are feeling so blessed!

I need to end this post positive:
The day before Thanksgiving Leah had an awesome day. She moved all day and when we talked to her she tried to talk back to us. We cherish these days. Here's a video: Her voice is really soft so you have to really listen for it.



Here's a cute picture of her that day!

Gratitude

On this Thanksgiving day I just want to express my gratitude for my family. I am so thankful for an amazing husband who continually works so hard for our family. I am also so grateful for each one of my kids and what they bring to our family.

I want to write some feelings of gratitude I have for miss Leah.

I have been thinking a lot this week about what Leah has brought to our family and others.

She lights up the room! People really gravitate to her. I love watching people meet her for the first time. Everyone says how much they love her eyes. They also love her skin color and her long thick eyelashes. People always say "she is so beautiful". They always ask a lot of questions about her. I really love it. I like telling them about her. I am so blessed to be her mom. I am so honored to take care of her. The days are hard but very worth it!

I am so thankful that she has changed my life forever... I tell her that everyday...I thank her everyday for changing my life.

She is changing others lives everyday. They see her and what she endures daily and they find strength  to fight their own life battles. It's beautiful! I see miracles happen daily because of her strength.

I don't mean to be too cheesy but Leah truly is an angel. If you don't believe in God please come to my house and I will share with you the miracles I see everyday.

A little something I wrote...

A little something I wrote to the Utah families fighting for Alepsia:

Just keeping it real...
I would like a politician to spend a couple days in my home and painfully watch my beautiful two year old daughter scream into a seizure, foam at the mouth, go blue then a pasty white followed by incredibly scary labored breathing. She then vomits and tiredly falls asleep only to her waking up an hour later to experience it all over again.

This is torture to watch and I can't imagine the torture she feels. If any good hearted politician watched her or any of your beautiful children go through these horrible seizures and see's how it affects every member of our families. I know they would make Alepsia immediately available to all of our children.

I am amazed by all of you! I am proud to fight this fight with all of you! Thank you Jennifer and Annette for leading this battle. You both are the strongest women I know!

As we say in our family...Stay strong, never give up and keep moving forward. Always keep a indomitable spirit!!!

Much love to you all!!!

A peaceful moment!

Love this!

 I had a moment this morning with Leah. I was holding her all morning and she drifted in and out of sleep so peacefully.  For some reason her body will not go to sleep without having a seizure. It was so nice to have a peaceful moment with her and no seizures. 

The Alepsia battle continues...

Sorry for the long delay of not posting: First of all the substance control meeting last week went well. It was our first baby step towards getting CBD oil legalized in Utah. The board is worried about the long term effects of Alepsia (CBD oil). We as parents aren't worried about the long term effects. We all live in the "now" we know our kids will not live long on the road they are all on right now. These seizure medications and the side effects from the meds are slowing shutting down our kids bodies. All we know is that the oil works and it's worked for two years now with literally no bad side effects.  Meeting the Stanley brothers, Josh and Joel that day was awesome. They are amazing men! We also met Rep. Froerer who is supporting and representing us! He is such a compassionate man. He sat by us during lunch and asked us all about Leah. We are so thankful for all his hard work for us and the hard work from the Realm of Caring foundation.

Here is Josh Stanley speaking to the board.

Here we are with Josh

Basically this is what it all boils down to...Alepsia is the hemp product we need for our sick children. Hemp is legal in Utah if brought in from another country but not legal when brought in from another state. This is the law we are trying to change. I hope that makes sense? There will be more meetings this week continuing to try and change this law. Lots of prayers this happens soon! We don't have time to waste our children need the oil now...well we really needed it two years ago ;)

More on Leah!!!

She is doing pretty good! We always have rough days but it seems that we are on a track lately of having more good days than bad days. YAY!!!

Here is Leah having some good days! These are days where she is having only one or two seizures a day. Miracle days is what I call them!

Leah with her awesome brothers.

One day I was watching a video on my iphone of a girl who has cancer singing the Katy Perry song "roar"(by the way it's amazing everyone needs to youtube it) and Leah reached out her hand and set it on mine. Oh yes, I sure did cry! She has never done that!

 Leah wearing her purple for epilepsy awareness month. Another awesome day!

Leah doing physical therapy. She had such a cute little smile that day! She did so good at therapy this day!

My daughter Lauryn amazes me! The first week of Epilepsy awareness month she asked all her friends to wear purple on Friday. She also took a washable purple marker to school and she drew a purple ribbon on the students hands. Many kids don't know what epilepsy means. Lauryn then educates them and also tells them what an indomitable spirit means, it means someone is strong and never gives up! One day the students could dress up as superhero's and Lauryn dressed all in purple and made a sign that says "My sister is my superhero". She did all this on her own. She also is selling Leah's bracelets at school for a dollar. I am amazed at the support of junior high kids. Some kids have given $10 and $20 dollars. Lauryn wrote thank you cards to the kids who donated money to Leah. She also received a letter from a girl who expressed how much Lauryn is an example to her. I couldn't be more proud! 

Here is a pic of Leah's bracelet.

Another beautiful day with Leah! This day she fell asleep in my arms! She looked so pretty and so innocent!

The Big day!!!

Tomorrow is a big day! 

Tomorrow we will be attending a meeting of the controlled substance board. They will be hearing a presentation on CBD oil. We are in hopes that because of the nature of the oil, which is high in CBD and low in THC (the part that makes a person high), they may reclassify it as Hemp. It is an interesting thing to think about. There are hemp products everywhere that have more THC than this oil. We don't know when the board will make their decision, but if and when they do, they could make this available to us in Utah with the stroke of a pen. We will be crossing our fingers! We will also have the opportunity to meet the Stanley Brothers before the meeting. They are the owners of the Realm of Caring. They are the people that developed the cannabis strain that is having such a great effect on so many children. We are looking forward to meeting them and telling them thanks for all of their hard work.  We can't wait!

Epilepsy Awareness!

November is Epilepsy Awareness month. It feels so good to spread the awareness of Epilepsy. Since Leah has been sick I have had so many people come up to me and tell me they have Epilepsy. I never would have known because fortunately medication controls their seizures but it's still a battle for them. They have to deal with the horrible side effects of their medications and they never know when a break through seizure will happen. Around 3 million people in the US have epilepsy. Neurology and the brain are so complicated, doctors don't know why seizures happen! But together we can be united and always have hope for a cure!

I saw this on a shirt and loved the saying! It's exactly how I feel!

My kids are loving this awareness. We are making white rubber band "Hope for Leah" bracelets that have the purple ribbon on it. They are so excited to hand them out to their friends. We also emailed the "Ellen" show and told them about Epilepsy Awareness month and told them Leah's story. We asked if she could spread the word about Epilepsy Awareness. My kids are so excited and hope they do a segment on Epilepsy awareness. I told them the chances are one in a million but I also told them that that's okay because we always try. 

Hope 4 children with epilepsy

Hope 4 children with epilepsy is a group of parents whose children have severe epilepsy. We had a dinner last night and we got to meet a lot of the incredible families. It was so nice to finally meet the amazing women who started the group. Annette and Jennifer are so busy everyday, fighting to get CBD oil legalized for our children. We desperately need this new treatment option for our children. Here is some information about the CBD oil treatment:

Alepsia is the trade name for the high CBD/low THC cannabis plant. This plant has anti-epileptic properties. CBD has the medical benefit while THC causes a high. The Alepsia plant is a hemp plant with less than .03 THC and has 20% CBD. Alepsia has been given to children with refractory epilepsy and the results were substantial. The children had a 80% response rate, at least a 50% reduction in seizures, no side effects and it also has neuro-protective properties.

I have had so many friends and family ask what they can do to help (LeAnn- thank you for asking).
Right now we need everyone to share this information. Please tell your friends and family about Leah and these children and this new treatment that they need. As far as the legislation goes it's kind of a waiting game right now. Many wonderful things are happenings and big meetings are being held. We have some great support behind us but we need more of the public to be informed. Also, the Stanley brothers from the Realm of Caring foundation in Colorado are helping us fight for this oil to be legalized here in Utah. Again...please share Leah's story and this new treatment for epilepsy.

We would do anything to see this beautiful smile again!

Halloween fun and more...

Leah was a ladybug for Halloween! Here's some pic's of all the Halloween fun:

This is Leah at the Kauri Sue Hamilton school (special needs school). She loves it there. Her eyes just light up when she is there! They sang Halloween songs, read Halloween books, decorated cookies (mom decorated one for Tyler) and they went trick or tricking to the administration offices. Super fun!

Leah with her brothers & sister.

The kids carved a pumpkin for her. A very happy pumpkin!

Here Leah's therapist's are putting together a cute chair for Leah to have at school. These woman are pure entertainment. They are so funny. 

Me and Leah hanging out watching Becca and Susan put the chair together. I was feeling very useless but got a good hour of one on one with her. She was having a really good day that day!

Leah and my dad at Trent's Lacrosse game. It was a beautiful Fall day so I took Leah to the game. She loved being outside. I cannot expression the amount of gratitude I have for my dad. He comes to my house every Wednesday and helps me. He does dishes, sweeps, mops, laundry...everything. I am so thankful for him. I love him very much!

                                                 

Another great picture of these two cute kids!

Appointment with Dr. Longo

Dr. Longo is Leah's metabolic/genetic doctor, we meet with him yesterday! First of all walking into Primary Children's hospital is always difficult. Walking through the doors and smelling the hospital, smelling the hospital food and having all the horrible memories of all the times she has been in the hospital flash before me all as I'm walking to the doctors clinic. I was overwhelmed with so much emotion and anxiety.  All the emotion's of everything we have been through came to the surface. I had many times during the appointment and after the appointment of wanting to just crawl in a hole and cry for a couple hours. Yes, crazy things have happened for two years. But, the wonderful thing is I get to determine how I react to those things. As much as my poor body wants to go into shut down mode sometimes.  I will not let it, I will leave those emotion's in the past. I will keep moving forward... I will keep fighting! I will do it for Leah, my husband, my kids and most of all for myself! I had a diet coke and a little chocolate and I told myself to let it go!

About Leah's appointment...Dr. Longo feels that the GRIN2A gene may not be what's wrong with Leah. Chad and Leah both have a mutation in the GRIN2A gene...the big question is why is Chad normal and Leah isn't?!!! Chad and I have been wondering this ever since we got the test results.  So...he wants a full DNA sequencing done on her and maybe the whole family.  Well, this is CRAZY expensive!!! He said that the U of U is trying to get a grant from the government right now to do this genetic testing and they will find out in a month or so if they got the grant. If so, this can be done for free. If not, then we just have to see what our insurance will cover. We have always had a feeling that there was something else wrong with Leah. Dr. Longo said that maybe this gene mutation is just simply a mutation and not the cause of Leah's problems. He said we all have mutations. So, here we go again. Back to square one.

In the mean time... he is increasing her Serine supplement and starting vitamin B-12 shots. They also did a urine sample to rule out a couple things. We are also going to see a new neurologist.

We will keep fighting the battle!

Leah at the pumpkin patch

We went to the pumpkin patch last week and had a blast picking pumpkins!

Here's some pics:

I promise she didn't have a ride in the wagon....haha!! Could you imagine?! We are crazy parents but not that crazy ;) 

Video of Leah's awesome day!

Here's a video of Leah when she had a great day last week!

Here's a cute pic of her!

Yesterday Tyler said to me:

"Mom, I'm Leah's superhero".

That kid amazes me!

I think I may have posted this quote before but I just love it!

Video of Leah holding her head up!

Leah's therapist brought us a nice bench for Leah. They showed me lots of therapy techniques. Here's a couple fun video's. Becca was wearing a mask because she had a cold and she didn't want to give it to Leah. She was hiding behind Leah! Her therapist's crack me up! 

This video is good, but I have another video where she is totally holding her head up all by herself for a long time. I am having a hard time downloading it so I will have Chad help me post it tomorrow!

Here's another great quote:

GI doctor appointment

We meet with a new GI doctor over a week ago and she was awesome. Her name is Dr. Harnsberger and she gave us a great plan for Leah. We had many concerns and she addressed them all and gave us great solutions. She told us to consider to feed Leah on a slow drip all night so I don't have to feed her during the day, I just have to hydrate her with water. I thought to myself...seriously! I can do that? no one told me I can do that. So, of course we started this new feeding schedule that night and it went so well. We are now into it over a week and she hasn't thrown up at all. She is very comfortable all day! I feel like I got my life back in a way. I seriously spent my day feeding her and burping her...all...day...long. It got very old! I would feed her one feeding for over an hour and burp her 4 times in between only for her to throw up and I would have to start over again. Oh my, it got to me. I cleaned up so much throw up, I did so much laundry and I was pretty dang tired! I never complained, I just did it! That's what mom's do! Now, since she hasn't thrown up and I am not spending my day feeding her, I feel like a new person. I have energy to do so much more and most importantly I have more time to do therapy with her. I didn't get a lot of therapy time in with her because as you know, I was feeding her all day or cleaning up after her. A lot of people say I act a lot happier. Who wouldn't be a happier person...right?! She seems to be happier too.

What an awesome day today!

Words can't even describe my joy when Leah has a good day! She only had one clonic/tonic seizure Saturday night and only one last night. She has had MANY absent seizures but those don't wear her out like clonic/tonic ones.  So basically when she doesn't have big seizures our baby girl comes back to us and she did today. It was absolutely beautiful!!! She held her head up all day, SERIOUSLY!!! I can't believe it! She held her head up and also turned her head to look at me many many times. She tracked me all day. When I moved she turned to find me. WOW!!! I can't believe I am writing all this right now. Her little spirit connected with me today!!! Through her beautiful eyes she showed that she knew I was her mom and that we have a special bond! I treasured today. I held her and talked to her and she peacefully fell asleep in my arms tonight. It was so beautiful! I thanked my Heavenly Father over and over for today! It was a blessing from above. I know my little girl is fully there. I am so thankful a window opened and I got to see her for a moment. I use to get angry at God when she would come to us for a day and the next day she was gone again. I felt like I was being tortured I questioned God why he would do that to me. I would cry and cry! I have no angry towards God now. That attitude does nothing good, it just destroys us! I now just have a very humbled heart full of love and gratitude! I was blessed today! I am so humbled that I got this beautiful day today!

A loop of seizures/updates!

On Tuesday around 5:00 Leah started having really bad screaming seizures. Usually she has one and then goes to sleep and then wakes up okay or maybe has one more and then she is done with these bad ones for a day or two. But this time she got into a loop and didn't come out of it for about 18 hours. She does this every so often when she is getting sick, growing teeth or just having some kind of change in her body. It's so scary and I never know when she will pull out of the loop. Usually kids with epilepsy will receive a rescue medication when this happens. But these meds don't work for Leah. Dr. Filloux has us give an extra dose of pheno and sometimes she pulls out and sometimes she doesn't. I get very upset when the loop happens. I get very anxious and I cry a lot!! Chad always reassures me that she will pull out of it. Finally at noon on Wednesday she pulled out of it! I just love and kiss her for hours and hours and tell her how much she scared me and to never scare me like that again! Here's a pic of her right when she came out of the loop. Looking pretty good for what she just went through!

Leah woke up crying this morning! When I heard her cry I anxiously ran into her room...feeling scared and excited at the same time. When I got there she was like a healthy baby crying for her mom and dad to come get her. Here is a video of her crying. Such a sweet sound! We haven't heard her cry for months!

Here is a pic of me and Leah wearing our U of U gear! Cheering on our Utes is such a big stress reliever in our house. We are BIG U of U fans. Also, rocking out to music and dancing in my family room relieves my stress and completely embarrasses my kids!

I am so grateful for all the woman who are working so hard to get CBD oil legalized. "Hope 4 children with epilepsy" have a Facebook page that they continue to update the progress of getting our children CBD oil. Amazing things are happening daily! I hope to do my part to help bring the oil to our children in Utah. I continue to hope and pray that Leah will get the opportunity to be treated with CBD oil. 

We will never give up on Leah! We will always continue to find a treatment to help her. She has some kick ass parents (sorry about the bad language). We will always search and search and search for a treatment. This disorder and trial will never beat us. 

Here is a picture of my beautiful baby girl! There is a reason why she is here. There's a reason why she is still alive today! She is a fighter! She deserves a chance! 

CBD oil to treat Leah's seizures!

We continue the hope for Leah. As I watch her seize 5-10 times a day right now I ache for the opportunity for her to be treated with CBD oil. It is truly a miracle to see these children who are treated with CBD get their life back! We pray that Leah will one day get a chance to try the oil and see if it stops her seizures. The heart ache of watching her horrible seizures never goes away. She needs to have her seizures go away. I am afraid she won't survive long with this life! We are in desperation and this oil brings us hope. We hear her seize all night and we hold our breath every time we go in and check on her and also when we get her in the mornings.  Her seizures are really bad right now. She goes blue and has labored breathing during and after her seizures. I am posting a video of her seizing. I feel it's important to document her life. That's why I have this blog. This video is hard to watch!

 

Leah's visit to the Deaf and Blind School in Ogden was awesome. We learned so much! Here's a pic of Leah getting therapy.

Here is also a pic of my kids with Leah! They love her so much!

Here is another pic of Ty and Leah cuddling! Every day he tells me to give him his cuddle buddy! They cuddle every morning and this day he fell asleep (She looks a little freaked out).

This next one is Leah's physical therapist Susan. They have such a special connection!

Hope for Leah!

My goal is to get Leah's story out there! We have so many thoughts scrambling through our heads on a 24 hour basis on how we can help Leah and these other children with severe epilepsy. We need the public to know of this devastating condition that Leah and many children and their families are battling every single day.

We are going to be fighting for CBD to be legalized in Utah! Please educate yourself and others around you about CBD and how it is helping seizure kids. Please watch this video and share it with others: (if you can't view this video please go to youtube and type in- Charlotte's web and Zaki's journey)

I would do anything to help our Leah and to get her life back.  Leah has a metabolic condition similar to Dravet Syndrome. They actually thought for many months that Leah had Dravet Syndrome. These metabolic disorders cause severe epilepsy that cannot be controlled by seizure medication. We have nothing else! The doctors have nothing to help Leah! We continue to watch her seize daily and become more and more catatonic! We need to see if CBD would stop Leah's seizures.

WE WILL NEVER GIVE UP!!!

Leah is 2 years old!

Our Leah turned two years old on August 8th! We can't believe it! The past two years really flew by but also went really slow at times. We remember a time when we couldn't wait until she turned two years old because we had heard that some children with neurological problem grow out of it by the age of two. Unfortunately, this is not the case for Leah. She has a metabolic condition that causes neurological problems. Anyway, it really was a great day! She gave awesome smiles in the morning! We spoiled her with lots of new therapy toys. One special moment was Tyler's prayer that day (he really loves praying) he said in his prayer: "Please bless that Leah can talk and walk when she is two and that she can sing to me". Oh how I love that little boy!

Leah on her birthday!

Time to catch up! For those following I apologize for the long break between posts. Summer with four kids kicked my butt!  Busy, busy, busy!!! I wrote down somethings that happened I hope I don't forget to share them all.

Leah's condition at the moment is fair! She isn't worse and she isn't better! She continues to seize about three to ten times a day, depending on if she has a fever, teething (which is happening at the moment) or frankly for reasons we will never know. She is still on Phenobarbital and we are in the process of adding more Phenobarbital, trying a new drug or doing both. We have got to slow down these seizures!

Good news: She has FINALLY gained weight, She is almost twenty pounds! I seriously never thought the day would come. She doesn't have crazy chicken legs anymore thanks to not as much vomiting! I no longer use her pump to feed her anymore, I syringe feed her everyday. I burp her constantly now and it as made a huge difference! Because of all this she has finally gained weight she looks so healthy now. She also has so much more hair, she looks like a little girl now!

Preschool...yes I said preschool Leah will be going to preschool next year...crazy!!! Becca, her therapist wants her to go to a couple special classes a week and get her use to getting out of the house and going to a class room environment. This really is hard for me to even comprehend! My baby will leave me a couple times a week. When you have a child like Leah it's hard to believe that other people besides family can take care of her. The minute Becca talked to me about this I totally balled my eyes out. One reason was because I didn't want to send her off to school and another because in a year Becca won't be her therapist anymore. Becca only works with kids ages 0-3. I was crying telling her I would have never had made it through these past years without her. There were many times she would come and Leah would've just had a seizure and fell asleep so we just talked. She literally was my therapist in this sense. I was so lost and so sad! She helped me in so many ways. I could never repay her! So the thought of us moving forward without her just puts me in tears. She then informed me that there's no way we are ever going to say goodbye. She continued to tell me that we are a part of her life and that we will be getting together for lunch and play dates at the park. So yes, Leah is going to be going to a special eye therapy class on Friday's starting this next month and she will also be going to other classes sometime this fall or early winter. I don't know about this growing up thing!

We attended a special eye center in Ogden this past Saturday. It's a place where they teach us all about Leah's eye condition and teach us ways to help her. They are also talking to my kids about having a sibling with a disability and ways they can help Leah They will also be doing a lot activities with her and with my other kids.

Leah's new nutritionist is so great. Her name is Patrice and she has helped us a lot in nutritional ways but also gave us a contact for a doctor in Washington who studies the gene GRIN2A. He wrote up an amazing article on this gene. You can read it here:
http://www.washington.edu/news/2013/08/12/progress-made-in-linking-some-forms-of-epilepsy-to-genetics/?utm_source=rss&utm_medium=rss&utm_campaign=progress-made-in-linking-some-forms-of-epilepsy-to-genetics
This article explains so much about Leah's condition. Now I know why her speech is gone. This horrible disease takes their speech away.  Patrice also gave us his email address. We sent him an email explaining Leah and wondering if he could help give us more information about this gene or if he could help Leah. We hope to hear from him soon.

During the summer Leah had some pretty incredible moments. She sat in her special chair and I propped her arms up and put an old See 'n' say toy Old McDonald toy in front of her and showed her how to push it. She would move her hand and make this toy work. It was amazing! It put us all in tears and many other friends and family in tears when they came over and watched her do this. I will never forget that moment! When she hasn't seized she shows us wonderful progress. This only confirms that Leah is in there.

IF ONLY WE COULD JUST GET HER OUT!!!

More of Leah & Ty

Watching Ty and Leah together is heavenly. I know these two made quite the pack in heaven. It's so beautiful to watch him love her so much! The feeling that's around these two is amazing. They have such a beautiful friendship. She looks at him so differently than anyone else. There's an amazing bond between them. I adore it!

Here's some more words by Tyler:

Today he said: "Mom, did you know that when Leah is two she is going to walk".

In his prayers today he said: "Please bless Leah that when she is two she will talk".

It melts my heart!

Life goes on...

Summer started and life got very busy! I try and give each one of my kids my 100%. We go go go all day. Life doesn't stop even with a special needs child. We include her in everything we do. I think she has enjoyed all of our little daily adventures. The only issue we have is that the Utah summer heat has hit and Leah's body over heats. We have to be very careful with having her out in heat for long periods of time. We kept Leah home all winter and now she is seeing life outside our home. It's a lot of work taking her out. I rely on my kids help and they never let me down I am so proud of them. One of Leah's first outings was the swimming pool at our neighborhood rec center. I will never forget this day. My kids were off playing in the water and I was sitting on a bench taking care of Leah. I could feel all the eyes of children and mom's staring at me and Leah. I knew they were just curious about Leah. I had a very hard time with this first experience of having Leah out in the public eye. I was very uncomfortable with people staring at us. I actually cried that night when I put my kids to bed. I am now used to people staring at us. I just smile at them. I am so proud to carry around my Leah in public. The best thing others can do for me is to just simply give us a big smile. It would make my day!

Life goes on with Leah! The last post we had started seeing progression with Leah by giving her the amino acid serine. Unfortunately the progression came to a halt. It lasted about four weeks, then one day it all stopped and she went back to where she was before giving her serine. It was sad! We emailed Dr. Longo. He doesn't have any answers right now or another path to go down...very frustrating for us. We told him we wanted to go back to giving her vitamin B12 shots. He said that was okay. We also got more folonic acid to give her with her shots. This combo was a key to Leah coming back to us last summer. Hopefully we can see some results!

We want more opinions for Leah's condition. We decided we are going to take a small trip up to Helena, Montana to see a Pediatric Geneticist. One of Chad's doctor friends is good friends with this Geneticist and has encouraged us to have him see Leah. He said people come from all over to see this guy. We are in the process of getting all her records from her Pediatrician and all her doctors from PCMC. We hope to see him in August.

Leah continues to vomit daily. It's getting old very fast. I guess there's a connection with neurological problems and vomiting, she usually vomits after a bad seizure. We took Leah to see her gastro doctor about this and he suggested we put her on Erythromycin . We give her small doses a half an hour before each feeding. This helps speed up the stomach to digest food faster. In small doses Erythromycin doesn't act as an antibiotic, I was very worried about that. I didn't want Leah to be on an antibiotic daily. So far, it's worked okay. She still throws up almost daily but the volume has decreased. Sorry if that's gross! Dr. Jackson saw that her weight has plateaued because of the vomiting. He now wants her intake to be 1200 calories.

I meet with a nutritionist this past week and we are finally starting the blended diet for Leah. I didn't want to start the diet until we officially met with a nutritionist and Leah was being closely watched. Leah is fragile and very under weight so I didn't feel comfortable starting the diet on my own. She needs to be monitored very close by a professional. We came up with a plan and here we go. We will be starting her slow. She receives four meals a day of formula by a pump. She will now get four feeding a day by bolus (meaning I will be slowly pushing the food through a syringe into her feeding tube). This will take time at first. But our hopes is that her stomach will get stronger and she can handle the food at a faster rate. It might take 20 mins at first then hopefully we can get to 5 minutes per feeding one day. She will be getting REAL food. This is an example of a recipe:

1/2 cup cooked barley
1 1/2 c cooked carrots
1 cup pears
3 oz chicken
2 c whole milk
4 Tbsp olive oil

Blended up in my awesome blendtec blender. It purees it so smooth so I can push it through her feeding tube. I am so thrilled to give my child real food. I was not about to have my daughter go through life living on formula. It feels so good to do this for Leah. Lauryn said "Mom I love that Leah gets food now it helps me feel like she's normal".

Leah is now wearing braces on her hands. Because of her neurological problems she always has her hands in a tight fist. Well, her thumbs are now becoming deformed. She wears these braces to keep her thumbs out. She really wines when I put them on, she really hates them. It probably hurts her when I first put them on and then she adjusts.

I would never make it without her therapist's. I truly rely on them to help me care for Leah. They are so wonderful! I have grown so close to Becca, her occupational therapist. Sandra is her eye therapist and Susan is her physical therapist. I love them all! The best part is they love Leah so much and they take such great care of her.

I am doing really well these past few months. I am adjusting to this new life of caring for a special needs child. It took me over a year to get to this point but that's okay. I needed time to mourn and time to adjust. Having a diagnosis has helped this process. This is what Leah's life is meant to be and I accept it. The best thing I did for myself was to let it all go! I trust God! I gave him all my pain and humbled myself. I am not in control He is. When I learned to let go and let him be in control I became a new person. A happy person! I am myself again, I joke around and laugh again. I accept my new life. I love my new life. I love who I am because of this little girl. I am strong and humble and happy. I live a very simple life now. The little things don't matter anymore. I have learned a great deal about life these past couple years. I truly live everyday to it's fullest! The little things in life are the greatest things. I thank God everyday for this new view of life!

Noticeable improvement!

Leah is doing amazingly well! She is moving her little body like crazy! Her legs are going going going! She is moving her head all around, looking at everything. She is taking in the world! It is so beautiful to watch. It brings me to tears sometimes. Everyone says "she looks so alive". Our family and friends are blown away when they see her. It's been so fun. I hope it just keeps going! I pray this is the right treatment for her. So far so good.

The down side is Leah is still having seizures at night. But the up side is the seizures aren't affecting her progression.

Leah's vomiting is still bad. We switched her formula this week in hopes that it will help. We are also giving her baby food. She is doing well on the baby food. I am also blending her some fruit and adding it to her formula. We are slowly transitioning her off formula and on to a blended diet. We got a blender from "Blendtec" it's so amazing. It blends food perfectly so it can be pushed through her tube. An everyday blender wouldn't work we needed a Blendtec blender. It is seriously amazing! I couldn't do a blended diet for Leah without this blender.

Leah got her eyes checked. Her vision is great! Her eyes are working together and the one eye that sometimes turned in has corrected itself. Leah's eye therapist comes every week. She was so happy with Leah's progress last week. 

We have an appointment with her gastro doctor Dr. Jackson on Wednesday. We are anxious to chat with him about her reflex, vomiting and constipation. My happiest days are when Leah doesn't throw up and when she poops. Seriously, it's crazy what makes a mama happy!

Tyler is still just so dang cute with this little girl. He said the other day. "Mom, Leah has the tiniest ears in the whole wide world, I just love them. They are so soft and squishable." I just love that kid! He cracks me up!

Test results

WOW!!! It's been way too long since I last posted. Life has just been crazy! Chad left for Texas for a week... A week of taking care of Leah and three other children alone is madness, Leah alone is a two person job. But, I made it thanks to wonderful parents and in-laws. Then I got sick and at that point I realized I just can't ever be sick to keep up on this life especially being sick for over a week and the week my parents went out of town.

We got our test results back. It showed that Chad is the carrier of this gene GRIN2A. As a result of this news it makes it difficult for the doctors to figure out exactly what's going on with Leah. As for now we are going to continue to treat her glutamate channel with serine which is another amino acid. When the cells receive serine it triggers the glutamate channels to open up. We are keeping a journal and reporting daily changes. Changes we have seen after being on the serine for a week now are: She is moving her head to look at us when we call her name or shake a toy (this is HUGE). I can't even describe the joy that we have felt when she turns her head to find the person talking to her.  She is very alert and is giving great eye contact, She is kicking her legs a lot, she has more expressions on her face. She is also making little noises (we haven't had that for almost a year). We are absolutely thrilled with this recent progress!

Having an answer and knowing Leah's condition has been a big relief! We have prayed for a year and a half to get an answer. I still can't believe we got an answer. I never thought that day would come. We feel like we can move on in life. We sleep better and our brains aren't going 100 miles an hour trying to figure out Leah...We just simply adore this little girl! We love who she is! She lights up the room! I am so honored to be her mom. This past Mothers day was very emotional for me. I couldn't stop thinking about a poem I read. The last sentence in this poem is says "God hand picks mothers for these special children". God trusts me with Leah. I am so honored!

Button surgery

At PCMC (way too early) waiting to go into surgery:

Surgery went well, here is her button:

Tyler said today: "Leah you are growing up so fast".

An appointment with Dr. Longo

We met with Dr. Longo today, he is Italian and has a very strong accent. I struggled to understand him but my husband is a champion at understanding him. Chad also understands medical language so I let him take over. He really knows how to speak to these doctors after all that's what he does for a living. I basically just have Chad translate the whole appointment to me afterwards.
Dr. Longo was happy to see that Leah was a lot more alert from the last time he saw her. He explained in detail Leah's GRIN2A (glutamate receptor gene). He also expressed how very rare it is and that the medical industry just found the gene three years ago. He is anxious to get the results from our blood tests (hopefully they get here soon). He said that he needs to see if we are carriers before he treats Leah. He is going to treat Leah by giving her a certain amino acid. This amino acid opens up the receptor that is not functioning correctly, he hopes this will help Leah. Dr. Longo explained that Leah will always have this condition but he hopes that he can help give her a better life. He said that six months ago he was very scared for Leah, he is no longer scared. Hearing these words from him really helped give us hope.

We are headed back up to PCMC tomorrow morning to have a small surgical procedure done for her  feeding tube. She is going to get a button put in. She will no longer have a tube hanging from her belly. I will show pictures of the button soon.

As many of you know Leah has a terrible stomach. I thought I had gone to the ends of the earth to help this poor girls stomach. But I guess I haven't gone far enough because I just found out about a blended diet for tube fed children. I am reading a book on it and I've been discussing it with Leah's therapist Becca, who is a feeding specialist. Together with a Nutritionist we are slowly switching Leah to a blended diet. This diet is basically blending nutritious foods and syringing it through her tube. Of coarse we will be starting out like she is a six month old baby getting her first foods. I am so excited. I approved it through her doctor and we will be on our way soon. Many families have found that their tube fed children with stomach problem have done so well on this diet. Their constipation, reflex and vomiting go away. The thick mucous that these children get goes away and great color comes back in their skin. I can't wait to get started!

Leah sleeping

One of my favorite things is to watch Leah sleep, she stretches and moves her arms and legs around like a healthy baby.

Leah fell asleep in her stander. WOW! She has some crazy hair in these pictures.

Leah was having all sorts of crazy dreams in this picture.

So sweet!!!