Merry Christmas!!!

Merry Christmas! Thank you for all your love and support for Leah! We are so lucky to have each and every one of you a part of her life. Words can't express the gratitude we have as Leah has received a very generous Christmas gift from an anonymous person. We feel very blessed! Much love to all of you! 

A neat Christmas surprise!

Leah received a package in the mail full of Christmas cards from high school kids. It was such a neat surprise and of course it made me cry! We don't know any of these teenagers and they took the time to reach out and show love. Leah also received some gifts from some high school kids from Olympus who come to her school and help in her classroom. These kids are truly special. I went to her school last week for a Christmas party and I met these awesome kids. The love they have for her is truly overwhelming. They told me that she and the other students have changed their lives for the better. My eyes were full of tears. One girl made her a rice bag to help keep her warm and a guy gave her a Frozen snuggie blanket and explained that he wanted to give her a blanket that would cover her arms when she is in her wheelchair. I watched these teenagers love and care for her. It was so beautiful to watch! These moments of love make our Christmas extra special. 

Adding a third day at school/Meet with Genetic Doctor!

 She is also doing so great at school. They want to add a third day during the week after the Christmas break. I think this is a great idea because she has progressed so much since she has been in school. I think we made such a good choice with her school. Also, we met with a genetic doctor a couple weeks ago. He and other doctors have been doing Leah's genetic testing. They found a few things but needed to do testing on our families to confirm those specific mutations. Our families gathered and they all got cheek swabs done. I love them all for doing that for us. He also said they need to do Leah's full genome (DNA) testing. He said that he needed funding to continue. We said we are ready to do fundraising or whatever needed he became uncomfortable and said he cannot ask us for money. He said he will find the funding through some foundations. Hopefully we can move on to the next level of testing soon. I am learning to have great patience 

A sibling to a child with special needs.

One of my close friends sent this to me. I literally cried my eyes out! This is so beautifully written. I love my Lauryn, Trent & Tyler. They have become the most beautiful kids because of our little Leah. 

Hey there,

I heard you’re the sibling to a child with special needs, and I wanted to write you a letter explaining why you have a one-up on life. I know your life might seem hard or different from your friends, but trust me, you most definitely will be more prepared for this life than anyone else. Let me explain…

I heard you deal with more than any child should. Your parents spend a lot of time away from you. You know they’re taking care of your sibling, possibly bringing him or her to the doctor. Maybe your sibling is admitted in the hospital often; your parents might be on the phone taking care of insurance business or even physically caring for your sibling. I know, my friend. You see this more often than not. You see the love your parents have for your special sibling, and it’s being embedded into your heart. You see the patience they exhibit when caring for him or her, and it’s being buried into your soul. You see that your parents never stop trying to get what your sibling needs, and it’s being ingrained into your mind. You see your parents exhaust themselves so your sibling and you are well taken care of, and you’re learning from this. You may not know it, but all of these little things are teaching you traits of how to be an amazing person.

I’m certain that being the sibling to a child with different needs is a struggle. I know you have those moments where your heart stings with jealousy, where you’re worried sick over your sibling. I know you have those moments when you get mad because you can’t go to all the birthday parties you want to. All of those times are totally understandable. You have a right to be upset every now and then, but I can bet that you can think of some pretty cool things you have in your household that your friends don’t. How about all the cool equipment your sibling has, huh? I know you’ve climbed into that wheelchair or played with his super cool assistive technology toys. How about getting to see your sibling reach a milestone and that proud feeling that overcomes your body? You get to experience a friendship like no other. Your sibling completely and utterly trusts and loves you with a love that can penetrate the coldest heart. They look at you with those beautiful eyes and know you’re there for them no matter what. The bond you have is indescribable. You’re their sibling, their friend and their protector. Your sibling might not speak verbally, but we both know your hearts together carry on conversations us adults could never possibly understand.  And I tell you what, we’re so extremely jealous.

Did you know your parents watch you and your sibling’s interactions on a daily basis and their heart literally wants to burst out of their body with pride and love? They see everything you do for your brother or sister.  They notice when you walk by and give them a quick kiss, stroke their hair or give them a hello. Your mom and dad love to witness you sticking up for your special sibling or when you go out of your way to make sure he or she is included in everything. They quietly observe you as you help with therapies, put oxygen masks back in place and hold hands during tests or doctor visits. Your parents recognize every time you perch yourself on the counter to help prep medicines or bring them a diaper, a syringe or whatever else they need. You do such a crazy amazing job helping your parents. It surely takes a wonderful little boy or girl to do what you do on a daily basis. I’m sure they tell you thank you, but sometimes if they don’t just know they are beyond thankful for you. 

But most important of all, my dear one, the reason you are going to rock this life: You know true love, you know true heartache and you know what’s truly important. You have lived a life that takes a strong heart and a strong mind. You will mature much faster than your schoolmates (don’t be too hard on them), you’ll exhibit compassion that astounds others, you’ll know more about healthcare than 95 percent of adults you pass on the street, and you will most definitely have a wicked sense of humor that will enable you to keep life joyful no matter what. When you were introduced to your sibling with complex needs for the first time, that moment in time is pinned in the stars, for it was then that your destiny was determined. You will be an awesome human being and you’re going to change lives for the better… all because you were the sibling of a child with special needs. Rock on, my brave friend.

All my love,

The momma of a child like you and your special sibling

Let go of what is!

Let go of what is!

I don't know maybe it only makes sense to me. I have been thinking and I am very grateful that Leah has been doing pretty good lately. When I struggle to find answers and wondering why Leah has to suffer and why she got this life. I am so grateful for what comes to me...from God... let it all go! Let go of your feelings of sadness, let go of what life I thought Leah was going to have, let go of the why's. Be okay with what it is... even though I don't understand any of it. My answer is to be okay with what it is. When I get these answers and have a feeling of total peace. I feel better than I have ever felt in my entire life.

I strive every day to let go of what is.

I am so blessed!

I hope everyone had a great Thanksgiving with their family and friends.

I am so blessed! I have a little angel as my companion every single day. She doesn't leave my side almost 24/7. I tell her every day "I didn't know I was going to be given an angel". Why me I ask myself? How did I deserve to care for this precious little girl. I tell her every day "thank you for coming to me...thank you for choosing me". We have a connection that's undescribable. It's a heavenly connection, I feel it every day. I know others feel it too. People can't get enough of her- they crave her presence. Many people say "I love the way Leah looks at you".

Leah has a very wise soul. I learn from her every day. We don't need to communicate with each other-we already understand each other. I am constantly amazed by her strength. I have learned that life is precious and beautiful. I am so grateful that this little girl has taught me that all the little problems that I thought were problems really aren't problems at all. I appreciate all the small things in life. All my relationships with the people in my life have changed for the better. My life has forever changed because of her. Even though the days are hard and she still doesn't have a diagnosis there is one thing that will never be taken away from us and that is...the love I have for her!
I love you Leah!

X-men quote

I love the X-men movies! We watched the latest one again today! I love this quote when the old Charles talks to the young Charles. I really felt something while I watched it. I relate this to our experience with Leah. To sum it up he says:

"As frightening as it may be, the pain will make you stronger. If you allow yourself to feel it. Embrace it. It will make you more powerful than you imagined. It's the greatest gift we have- to bear the pain without breaking. It's born from the human power- HOPE!!!"

A Hockey game with Angel Hands.

We were lucky to go to a hockey game last night with the Angel hands foundation. Chad's family came with us and we had such a great time!I knew it was going to be very cold last night and very loud at the hockey game so I left Leah with my friend Melinda. Those two things are not a good combination for Leah, it's best that she stays home in a cozy house. When we are at these events I really miss her because I see all of the beautiful special needs children with their families and I wish that Leah could be with us. The foundation gave our children noisemakers, a T-shirt, a voucher for a treat and silly string to spray the mascot with. My kids had such a blast! I am really grateful for these events and this wonderful foundation. Because of the circumstances of Leah we don't go out a lot. So it's fun for us to be involved with these events. It feels so good to be with people who are experiencing the same trial in their life. It is very therapeutic for me to be with these wonderful families and I think very therapeutic for my children to see other siblings and know that they are experiencing the same thing as them.

Leah did great with my friend last night. She didn't have any seizures and she was very aware and alert. Actually, she didn't have any seizures all day! It was a great day for all of us!

Morning smiles!

I used to dread mornings with Leah. The minute I woke up and went to check on her in her room I held my breath every morning hoping she made it through another night. The first thing I would do when I opened the door and peaked over her crib is check to see if she blinked her eye and if she did I knew she made it through another night. This is not a way for her mother to live. But ultimately, Leah has had very very sick days. Horrible nights full of seizures and most the time vomiting. And with the vomiting comes a huge risk of aspiration.

But things have changed! She has done quite a bit better with her nights. The seizures have been better and the vomiting has been better. I have noticed a change in me when I wake up. I can't wait to walk into her room. Yes, I still get slightly anxious but it's different now I have gotten a different morning scenario. Yes, I do check to make sure she made it through the night still slightly holding my breath but also I find myself kind of running to her crib to say hi to her. Before these last couple of weeks she always had a blank stare on her face and gave me no reaction when she saw me and at times I never really knew if she knew I was there because she never looks at me or reacts to me. Now, when I walk in her room something is different she turned slightly to look at me and the look on her face changes, she gives me full eye contact and she holds her gaze at me. Her facial expression is of pure happiness! Leah is happy to see me! It's still seems so not real! I can't believe it! She gives me smiles in the morning and she never stops looking at me with a happy look on her face. Please understand I never thought this day would come. It's truly amazing! I couldn't be happier!

Keeping it real!

I really struggle with my feelings! I bottle up a lot inside. I would also say that I am more of a private person. But, I've been thinking a lot lately about my true feelings and my life with Leah. I don't write on her blog very much. Mostly, because I am crazy busy. But also, because I have a lot of hard days and I don't want to share the hard times. Why? really because I always want to give good news and uplift people. In reality, there's not always going to be good news and that's okay. That's life! I follow some blogs and FB pages for sick and special needs children and I love hearing everything. I love hearing the good but I also like hearing the bad. It doesn't bring me down. It actually helps me realize everyone has bad days. So here I go! You all get to hear the Good, the bad and the ugly. But mostly the good! haha! I had to throw that in ;)

A perfect moment for a mother.

I can't believe I am going to type these words...Leah giggled! Yes that's right, my little girl who doesn't even make a sound giggled last week. I was tickling her and making my crazy mom sounds to her and she let out a giggle. I stopped in my tracks and said to myself "No, that didn't just happen". I immediately grabbed my phone to record a second giggle. She didn't do it. I was a little disappointed because I really wanted to share the giggle with everyone. I soon realized it was a moment between me and her that I will cherish...until the next giggle. This giggle I am sharing was when she was one years old and doing very well on the ketogenic diet. This was the one and only giggle I got after she got sick. Through out these past two years I have listened to it well over a hundred times. It's the most beautiful sound to a mother's ears. 
P.S I apologize for my obnoxious cackle in the video. It's totally embarrassing!
http://youtu.be/amamBO7EVWI

Exciting news!!!

First of all.. 
Leah is back to herself and the seizures have dramatically decreased. Thanks to my friend Jessica she has a new highchair. We love it! It works a lot better for us. I use to use her wheelchair in the kitchen and at the dinner table but now that she is in school I leave her wheelchair in the garage. I am not able to go in and out of the house with the wheelchair because I don't have a ramp...yet!

Now for the exciting news:
At school today, Leah got assessed for the Eagle eyes. It's a system for controlling the computer using your eyes. Her teacher said she rocked it out  she said she was able to track all four quadrants of the screen and she knew exactly what she was doing. WOW!!! I knew Leah has always been in there and this just confirms it. I am in tears! I can't believe there is a device that makes it possible for her to learn and communicate. She will be assessed again next week. This is just amazing!

Not a virus...

I took Leah into the doctor last Tuesday and Dr. Hornyik thought she might just have a virus. Leah continued to have a fever and vomiting. I knew it wasn't just a virus. I thought and thought about what it could be. I remembered that her urine kind of smelled funny so I called the doctor on Friday morning and I asked to bring her in to check for a bladder infection. Sure enough it was a bladder infection. Dr. Hornyik was happy that I caught that and she recommended that Leah get an antibiotic injection. Leah continued to seize Saturday but Sunday she woke up a lot better. She finally stopped seizing on Sunday. She sure slept a lot this whole weekend and today she is back to herself. Last week was exhausting! It's so hard when she's sick, I get so stressed out. She was literally seizing about every 10 to 15 minutes, luckily they were small seizures. I feel bad she suffered for eight days and we couldn't figure it out. It's hard when she can't communicate to us. It's like putting a puzzle together. I am so glad that she is now on an up road.

I needed this today...

Leah isn't doing well! She has been sick for about a week now. She is running a fever off and on. Fevers bring on bad seizures...countless :( I took her to the doctor and she thinks she has a virus. She has a red throat, vomiting and the runs. Poor girl! I tend to get down when she gets sick. I wish I could take all this away from her. She endures so much and it's heartbreaking. Someone from a epilepsy group I am in posted this today. I really needed to hear this today!

"Every morning, we wake up and we go about our lives. There are days when we are stopped dead in our tracks and there are days when we feel we are elevated or accelerated. There are a few things you need to know as you go to your tasks today, either with anxiety or with excitement, with pain or with ease. You are irreplaceable. You are strong. You are beautiful. You are handsome. You can do this...one step at a time. You may not always see it, but you have an army of people that love you and will support you."

Leah is doing better!

Leah is doing better! She finally turned Friday afternoon. She did great today, no seizures during the day. She was so alert! She moved her head around. She moved her arms and responded when we talked to her. These days get us through the hard days.

Seizures are back.

It's been a rough couple of days. None stop seizures. Here's a video of one of them.

 It breaks my heart every single time she seizes like this...I never get use to this. Can you believe she did so well Monday and Tuesday and then she turns so quickly. Man...I wish I understand her sickness. It's a constant roller coaster ride... It's so hard on me...I get very emotional! I panick when she gets like this. I panick when I have done everything I can to stop her seizures and they don't stop. I beg for God's mercy! Over and over! I don't know how I lived with these bad seizures for almost two years. I lived in survival every single day. I am so much stronger than I thought. I am so proud of myself! I now realize how well she is doing... She has really done so much better these past few months. Days like today happen only about twice or three times a month...thankfully! I had to go pick her up from school. She had five of these seizures in 20 minutes. It freaked her teacher out. God bless special needs teachers is all I have to say. They really take great care of her. I am so thankful a nurse is there to care for her. She has had countless seizures today...honestly days like this I fear her body won't hold up. She has such labored breathing. Thank goodness for oxygen...and diet coke and chocolate for me!

24 hours seizure free.

This is an update I did on Leah's private FB page. If anyone wants to be added let me know.

Leah hasn't had a seizure for the past 24 hours. She had her first seizure free school day. Her teacher wrote a long list of all the things she did today. Leah made many choices at school with her eyes. This is very rare for Leah. I am so happy to hear all the success today! We had a great night with her last night and hoped it continued today. Last night she was very alert. It's like a light switch comes on. Usually it only lasts for a couple hours. This time 24 hours! She has had great eye contact, she tracks, she turns her head when I call her name. Her body is really loose so she is able to move her feet, toes and fingers. I am one happy mama today!

School has been life changing!

The best part of the day on Tues/Thurs is when I hear the van driving up my street to drop off my little girl! I can't wait to see her. I miss her when she is at school. She is there from 8:30-3:00. It's a long day for both of us. I have to admit I sure accomplish a lot while she is gone. I get caught up on laundry, grocery shopping etc. and I get a little me time. I can't take Leah to the grocery store so I depended on my dad to come so I could run errands. My mom also came every week to help with cooking, laundry, cleaning etc. All I do when Leah is having a bad day is just hold her and love her. These days happen regularly! So life gets put on hold. It's hard but I wouldn't trade it for anything. She stays at school even if she seizes all day. They take care of her. Having someone else care for her a couple days a week has been life changing for me.

School was great!

Leah did great at school this week. She goes Tuesday's and Thursday's from 8:30-3:00. A little bit of a long day. Her teacher said she responded best to music/singing time. She is a McClellan...we love our music! She came home exhausted. She went right to sleep...which is unusual for her. I also had a great day running errands this afternoon with no kids. That's a first! It was wonderful! A little note about Leah's dress she had on for her first day of school. It's pretty special to us so it seemed fitting for her to wear it on her first day of school. She received a couple beautiful dresses from a friend who works with Chad. This couple lost their one year old twin girl in her sleep. They sent Leah this dress with a note saying: "spreading the love". It meant so much to us. Much love to this family. We think about their beautiful girl often. 

First day of Preschool!

Leah is off to preschool! I felt like it was my first day of school. I have been so nervous these past couple days (let's be honest I have worried for the past three months). I woke up a lot last night feeling very anxious. When I saw the van driving up to pick her up my stomach dropped and the tears were flowing. I had to compose myself so I could talk to the driver. He was awesome and I felt very comfortable with him taking my child to school. I am actually doing way better than I thought. Ultimately I know this is so good for her. I met with her teacher and the nurse last week and they were great! Tyler did most of the talking at the meeting. He explained to them exactly how to care for her...so sweet! Tyler said "I don't want her to go to school I want her home with me". I had to explain to him how much she needs to go to school. He did great letting her go. Leah had a happy look on her face when she was getting loaded in the van...heaven only knows how much I needed to see that!

Much better!

Leah is doing much better! Her fever is all gone...just in time for her first day of school this week.

Love/Hate fevers!

Leah has been battling some horrible amounts of seizures these past two days. Lots of seizures before sickness is Leah's life. Inflammation causes seizures. So, of course we wait for the fever to hit. It came yesterday afternoon...24 hours after seizures begin. Her eyes didn't work at all for that 24 hours of seizures...so sad! The good news is...once her body starts fevering...seizures slow down and her eyes return to normal. We have a love/hate relationship with fevers. Hate the 24 hours before but love how she is while fevering...I know this sounds crazy but she is alert, her eyes work perfect and she is so active- legs and arms move a lot. Doctors believe what she has is autoimmune. Ibuprofen is our best friend right now. Seriously! What child looks and acts better when they run a fever. She truly is a mystery girl!

Our U of U girl!

A sweet moment!

I want to share a sweet moment we had a couple nights ago. We ran into a really neat family who has adopted five special needs children...in my eyes these parents have a straight path to heaven. Anyway, they have a little girl Lexy, who is blind. Her mom bend her down to Leah in her stroller and introduced her to Leah. She explained that Leah also has a vision impairment. Lexy instantly bonded to Leah. She asked what she looked like, what she was wearing while she felt Leah's hands and feet. I told her all about Leah. She was so intrigued. Her mom told me she loves special needs children. I was amazed at how relaxed Leah was with Lexy. She had a look in her eyes that we don't see very often. There was something there...something very special between the two of them. It was time for us to go...Lexy didn't want Leah to go! I didn't want to go...I didn't want to break the moment...I wanted the moment to never go away.

Happy Birthday!

Happy Birthday Leah! We are so grateful you are in our family. Every single one of our lives have changed for the better because of you. You have taught us what love truly is! We are so proud and honored to be your parents! You have such a strong fighting will to live. We are so grateful for each day we have you. We love you Leah!!!

Leah's therapist.

Leah will be three next week. I know...I can't believe it too! Leah has been in the Early Intervention program for the past 2 1/2 years. She is now graduating from the program. Her occupational therapist Becca has been her therapist from the day Leah got sick. She came weekly. But at that time Leah was having 30+ seizures a day. Heaven only know how many absent seizures she was having. Because of this Becca couldn't do therapy every week with her. So instead she and I would talk. Little did she know she was my personal therapist. I was very depressed at that time. I just lost my baby. I cried and cried to her. She seemed to be the only one that understood. She said just the right things to me. I know she was God sent. God can't be here but He does send us what we need and she was exactly what I needed. Sometimes the only way I got through life at that time was knowing she would be back again in a week. I didn't know how to take care for my sick baby. She guided me through it all. I could not have made it without her. She helped me and Leah so much. Leah's physical therapist Susan came about 1 1/2 years ago. Becca and Susan are best friends so we had a blast together. She also truly blessed our lives. Her and Leah had an instant bond. Leah's eyes lit up when she saw Susan and Leah did things for Susan that she didn't do for anyone else (except me and Chad). We all laughed together and cried together. I am so thankful God took care of me and Leah by sending these beautiful ladies into our lives. Life brings change. We said there are no goodbye's. It's been a very emotional day for me but they promised to visit. They are considered family now. We love them and will miss them. Even though these women won't be in our home every week they will be in our hearts forever. 

Lauryn's birthday!

Happy Birthday Lauryn! We are so lucky to have such a wonderful daughter! Leah and Lauryn had an instant connection when Leah was born. It was beautiful! Leah loved Lauryn and she always gave her big smiles. Lauryn has been such a strong girl for the past 2 1/2 years. Lauryn has never given up on Leah. She always helps me with her and babysits her all the time. She has never once complained! Lauryn handles Leah's life like a champ! Lauryn never pictured that this would be her life with her baby sister but I am so proud of her continued endurance. Below is Lauryn's favorite quote that has helped her through these past couple years. Even though Leah can't communicate I know she loves her sister very much!

Sweet surprise!

Leah got such a sweet surprise at the door a couple days ago. An envelope with this note and money. It said:

To Leah:
We hope Leah will be better. So we sale Popsicles, red vines, rocks and balloons just for her. Here is $10.75 to help get her medicine.

Wow!!! I am in tears! Such incredible hearts of these sweet little neighborhood girls. I am so touched!

Aware of Angels photo shoot.

Here is the pictures from the photo shoot Season Atwater from Aware of Angels did for us. They turned out so good. We are so happy with them and so incredibly thankful she took the time to do this for my family. These pictures are so precious to us. We never know when Leah's last day will be so we will always cherish these pictures. Chad and I made a video of the pictures. Click on the link below to view the video:

https://www.youtube.com/watch?v=llT_jp6Crks&feature=em-upload_owner

Leah's eyes!

Leah's eyes are beautiful! They speak words to us. They are our only communication with her. Sometimes her eyes get stuck up or to the side for an hour or a half day or the whole day. On days that her eyes don't work it's devastating to me. It hurts me more than seizures because seizures always end but I never know when her eyes will return and maybe one day they may never return to normal. Her eyes are the most important thing to us and because of this we decided to send her to the Deaf and Blind school (USDB) in August. We met with the Jordan school district a couple weeks ago and wrote up her IEP. At that meeting we had to make our decision about which school is best for her. Chad knew from the start that USDB was the best school for her. I knew it in my heart too! Her IEP meeting was very emotional for me. I had to fill out a packet of all the things she could do and all the words she could say and I had to mark "no" for everything. I just cried and cried...so embarrassing! It was a moment for me of realization. Anyway, she will be off in someone else's care for two days a week...so scary to me. But, it will be so good for her. Now the next project..we need to build a ramp for her wheelchair so she can go into a van that will pick her up. Where's the tissues??!!

Surgery went well.

I am so embarrassed that it has been a month since I have wrote on Leah's blog. Summer has begun and time just flies by. Leah had her tonsils out on June 9th. Everything went very well. The doctor put her in ICU after surgery to make sure Leah didn't do anything funny...Because she does have a history of that ;) She was in ICU for about a day and a half and then they let us go home. One of the doctors was a little bit hesitant to send her home because she was running a small fever but Chad talk him into letting us go home and keep a good eye on her. Luckily, we have a lot of equipment at home to watch her vitals. Leah started breathing so much better right after surgery and she continues to breathe so much better! Leah continued to run a small fever from leaving the hospital and it began to get worse so we took her in to the doctor and she got pneumonia from the anesthetic. Dr. Hornyik put her on two antibiotics and she was put back on oxygen for about five days at home. She started to get better and then about a week later she started to run a fever again and so we called the doctor and she changed her antibiotic. She is now doing so much better and she is back to herself. Yay!!! By the way -the seizures were horrible when she got pneumonia and when she was running fevers now her seizures are back to about five a day!

Preschool

Believe it or not Leah will be three in August! Crazy! It feels like she is still my baby. We are very nervous for this new step but it's preschool time in the Fall. We have two places she can go. One is the school for the Deaf and Blind (Leah has cortical vision which means sometimes her eyes and brain don't communicate with each other) and the other is the Jordan School District special needs preschool. Today we visited the Deaf and Blind school. It went well. We like that the classroom is very small (four kids starting in the Fall). We like that there is two or three aids and a nurse right there in the classroom. The class will gradually get bigger as the year goes but not much bigger. We really liked the nurse and the teacher. The class is four days a week 9:30-2:00. We can choose to only go two or three days. A van picks her up and takes her to the school up in Milcreek (I know that's far away). Then we have the Jordan School District preschool which is only a couple miles away and it's a half day two days a week. There are around 15 students with two aids and the teacher with no nurse on site. There are also model children (main stream children in class). We will visit this school in two weeks. We, of course are very nervous to send her off but I know she will love it. Her eyes light up when we go to the special needs school for play time on Fridays. Even though she can't talk or walk or even hold her head up that little girl is in there and I know she will love watching all the kids and get a chance in her own way to color, play with play dough and learn. I think we will know in our hearts what preschool will be right for her.

Aware of Angels

We are so excited to announce that Leah will be getting full genome mapping done. Aware of Angels is an organization that was put together by our friend Season. She is amazing. We met her and her family when we were lobbying to get the oil legalized in Utah. Her daughter Asia has a chromosome disorder and she also suffers from seizures. Season has started this foundation to help diagnose children with rare disorders. She has got doctors and labs to donate their services to help these children. Leah is now one of them and one of the first to hopefully be diagnosed through the genome mapping. We are so excited and so grateful to be a part of this. What a blessing in our lives! We have met with the doctors who are donating their services and they are just completely amazing. They are sending a nurse to come to our home to take my blood, Chad's blood and Leah's blood. They are also swabbing the cheeks of our other kids. They are very anxious to find what might be going on with Leah. We hope and pray that they will find what is wrong with Leah. This is our last resort for Leah. Our insurance denied this testing and we appealed it and they of course denied it again so we are so grateful to have this donated to us. I just feel like so many wonderful things are happening in Leah's life and we are finally going down a great path for her. She deserves it!

Chad and Leah are in a video on a website called Elenity. They are featuring Aware of Angels. 50% of all profits are donated to Aware of Angels. Check out the video here: www.elenity.com
Just click on read more and then click on the video. It's a tear jerker!!!

Check out Aware of Angels website:
awareofangels.org

ENT doctor and Sleep doctor.

Leah's overnight sleep study confirmed that she needed to see ENT doctor and a sleep doctor. We saw Dr. Park about three weeks ago and he confirmed that Leah does need her tonsils out. He also said that most likely she will need her adenoids out too. He is very concerned for her and wants her to get the best care possible during her surgery. We could tell he is very nervous for her for this surgery. As we all know Leah is a mystery child and he can see that she is so that makes him not know exactly how she will react to the surgery.  Because he is nervous I of course am nervous but Chad said that it's good to have the doctor nervous that means he will be right on top of things. He told us that he will have a special team on hand-I don't really know what special team he is talking about but he knows what he's doing. He also told us to plan on staying in the hospital for a week but most likely it will only be for about three days. Her surgery is scheduled for Monday, June 9th. I am feeling okay about the surgery. I do feel bad that it's just another thing that she has to go through. Poor girl!

Last week I took Leah to see the sleep doctor Dr. Pfeiffer. She also is very concerned for Leah! I really feel bad for Leah's doctors- she just confuses them. She thinks that Leah does not have sleep apnea. She said that yes Leah does desat at night but she doesn't believe she actually stops breathing. She went over everything with me that happened to Leah during her sleep, it was very interesting. She doesn't want Leah on CPAP machine mainly because Leah does throw up at night and that she feels it will be very uncomfortable for her. Plus she feels like ultimately the oxygen is doing what she needs right now. She asked us if we have heard about the CBD oil? Ha ha ha! We sure have-she said that she believes it would be very beneficial for Leah. We certainly agree. She said that she would like a second overnight sleep study done a couple months after her tonsils come out and when she has been on the oil for a couple of months. Sounds great to us!

So here we go- surgery on June 9th.

Happy Mother's Day!

It's been an awesome Mother's Day weekend. Leah has done extremely well these past few days. Very few seizures, lots of movement and lots of smiles! I couldn't ask for anything more.
My kids, husband, mom, mother in law and friends have made my Mother's Day one that I will never forget. I am feeling so blessed today! Here is a pic of me and Leah today!

Easter

I know it's way past Easter but I am obviously way behind on her blog. I have a lot of catching up to do.

Easter was great! She had a great day that day. She was full of smiles all morning. We couldn't have asked for a better day with her.

Chad and I spoke in church that day. I hestitated and really didn't want to speak. I didn't want to because it was Easter and I frankly didn't want to give the Easter sermon. Haha!!! I felt like my talk wouldn't hold up to the congregations Easter expectations. Again haha!! But I had a strong feeling to speak so I went ahead and spoke. I think it went well. The reason I am writing about this is because I want to share my thoughts about what Easter means to me and my trial with Leah. Ultimately it all boils down to our relationship with God. How much do we want Him in our lives? We get to choose every day if we want a relationship with him. Honestly, the last two years I struggled to want a relationship with him. Most days I didn't choose Him. I was mad at Him most of the time. I was mad at Him for letting my baby suffer daily. I carried a lot of angry. I told myself I didn't need Him, I could do this trial on my own. I stopped praying, I wanted nothing to do with God. Deep down inside I was nothing but miserable! This was happening on and off for about two years. I know what hell feels like. I've been there over and over. I know the pain. I have hurt so much inside for losing my daughter to a life seizures. This is not the life I had in mind for her. I wanted to see her walk and talk and play with my other children. I wanted and still want my baby girl back. I want the pain of watching her seize over and over to be gone forever. I want her free of her pain and suffering. I wanted God to heal her. I begged Him in prayer every day. I soon began to become so tired so weak. I lived in a blur. Daily tasks were hard. I couldn't function anymore.  I couldn't carry by burden alone anymore. I decided one day to pray and ask in prayer for my burden to be carried. I gave it to Him- Jesus Christ. I let go! This decision changed my life. I chose Him. He was always there...waiting for me. He never left my side. He gave me so many miracles. His miracles. The miracles I needed but didn't know I needed. I wanted Him to intervene and save my daughter from her seizures. I wanted Him to perform a huge miracle in her life and instantly stop her seizures and suffering. I now just put my trust in Him and His plan for her. I let go and I know that one day through Jesus Christ my daughter is going to be free from her pain and suffering. I know I will see her again with a perfect body. We will play and dance together one day. For now...my days are brighter! My load is lighter! I am happy again! I chose God! I chose a relationship with him! I get to have a choice everyday to carry by burden or give it to Him. He is there...waiting for us. He patiently waited for me. The Atonement means more to me now than ever before.

Leah had Pneumonia.

About three weeks ago Leah was diagnosed with pneumonia (explains why she had all those seizures- why I never can remember seizures=sickness is to come) so anyway, I have not had a lot of time to sit down and write on her blog. I have a hard time writing when I am stressed, I can't seem to clear my mind enough to write. All of my time has been given to her, my other children and my husband. Leah was very sick but luckily we were able to control it and take care of her at home and not the hospital. Thank goodness for oxygen at home, she was on it 24/7 for about two weeks. We didn't leave the house and we had a lot of sleepless night because she always got worse at night and we were so worried about her. Dr. Hornyik was right on top of it and put her on two antibiotics. She was also watched very closely. Pneumonia is so scary we are happy that she is feeling much better.

When it rains look for rainbows.

Leah continues to seize a lot! We have racked our brain to try and figure out what to do for her. We have tried everything. Sometimes inflammation causes her to have seizure so we have tried ibuprofen for a couple weeks...nothing. If she hasn't pooped she will have bad seizures...we have made her poop daily. That's another thing that's been a problem. She stopped pooping on her own. She has never pooped on her own anyway, we have always given her miralax but she isn't pooping with miralax anymore. It's been two weeks since she has pooped on her own. We always have to give her suppositories.  I have tried everything out there to help her tummy. We called her GI doctor and she recommends senna syrup. That's our next thing to try. Oh the fun!!!

I got a lot of phone calls from doctors yesterday. Dr. Hornyik called with the test results of her sleep study that she did up at PCMC a couple weeks ago. The results were not good. She desat's bad while she sleeps. She needs her tonsils out and her adenoids out. She also needs to be on a cpap machine. We are going to see a ENT doctor in two weeks. Dr. Hornyik upped her oxygen at night. Just a quick note: Leah's pediatrician is amazing!!! She works so hard for us and takes such great care of Leah. I don't know what I would've done without her. Also, our insurance has denied Leah's formula...many times!!! It's a specialty formula that's made out of real food like chicken, peas, peaches etc. It's the only formula that Leah doesn't throw up on. She is thriving on the formula, she has gained lots of weight. Dr. Hornyik fought for her to stay on the formula. I just love her. By the way, insurance finally approved it.
Dr. Swoboda's genetic counselor also called. All of Leah's test results have come back normal. The last resort is a full genetic mapping and of course our insurance denied it! They are trying to appeal it.

All that news was really hard on me. I held the tears in all day!!! Leah had a horrible day yesterday and I got all that news while Chad was out of town. My heart is broken for my little girl! I wanted to just cry for her. Instead, I grabbed my kids and we went to get some dinner and came home and watched  Uchtdorf's talk on gratitude from Sunday's conference and made cookies together. Watch this small clip when you have a moment. https://t.co/K8fuUNmAOv

I decided to turn my day around. No matter the bad news, I get to chose how I respond to it. I am learning this every day!

Bad days!

Tyler put sunglasses on Leah.

Becca and Leah. Chad let Leah suck on a sweet tart...yummy....she loved it!

 Best brothers ever!

We got a partial smile!