Happy New Year!

Its been a busy December. We moved into our new house at the beginning of the month. It has been a little chaotic. During the move, we lost our Mac keyboard. Our computer said that it was hooked up, so we knew it was in the house somewhere. It was tucked away in a box in Leah's closet. It was lost for 3 weeks. We have had lots of sickness in our family this month and Chad had knee surgery. Now its time to start the new year of posting on the blog.
   
Here is an update on Leah:
At the end of November, Leah started seizing again. She is growing her molars. 2 are here and 2 are getting close. The seizures lasted until the bottom 2 teeth broke through, then they stopped. During this time she had many moments of not eating. She is so skinny and frail, it really scares me.  Sometimes it has took us close to an hour to feed her, and then we would start the process all over again two hours later. This would take up most of our day (the unpacking the house has been a struggle). In the meantime, Leah's therapist came to do some work with her, She noticed something that we had noticed in the past. Her left wrist was swollen and had a strange curve to it. She suggested that we get it looked at. We took her to get an Xray. What they found made us feel sad for her. She had a broken arm. They suggested that we take her to an Orthopedic doctor. We were able to see a hand specialist. While we were there, we asked him to Xray both wrists. They found that they were both broken. Because of that, they did a whole body scan and found that she had a broken ankle too. It is very sad, because Leah has had no trauma nor does she even really move. Because of this, we will be going to see an endocrinologist to check out some metabolic disorders that affect bones. The breaks have already healed so they aren't going to do anything about it. She was such a strong fighter during it all.

Today is the 1 year anniversary of when it all began. It's been a very emotional day for me. It has been a long year and we still have more questions than answers. We have become different people than we once were, due to this little angel. Many nights throughout this year I have pleaded to God to heal this little girl and to please bring her back to us. It took a year for me to learn to change my prayers. I now pray that she can be strong and we can be strong enough to handle this life challenge. The transformation that happens when we choose this is nothing but beautiful.  I know he is there and I know he listens to me. His tender mercies let me know he is there and that he loves me and my family and wants us to continually grow and develop into the people we are today and the people we one day will be. The comfort he gives me and the many miracles we see daily in our lives tells me he is always there for us.  His help is there, we just have to go to him and let him mold and shape our lives.

So here's to 2013, it's going to be a beautiful year! 

   

Today I am very grateful for my friends and family:

I have learned how true this statement is...

When Leah got sick I had some friends slowly disappear and friends who immediately jumped in to help and be there for me. I don't get why friends disappear when life gets hard. Maybe it's too much trouble for them or they can't handle it. I think they simply aren't your true friends, and really who wants those kind of friends. My parents experienced the same thing when my sister was badly injured in an accident. The sad thing is sometimes it's family that disappears too.

I am so grateful for all my friends who have stood by my side helping me and my family. I am so thankful for them listening to me cry in heartache and always knowing just the right thing to say. They show up with dinners and always are willing to take my kids whenever needed. They always call and check on me. I know they are always there for me and would be at my doorstep in a second if I needed anything and I would do the same for each and every one of them.

And of coarse my wonderful family... I am so lucky to have such wonderful parents, in-laws and siblings. They are always there for us, helping us in every way.

Thank you family and friends for supporting and loving me and my family! I love you all!

Today I am grateful that our family has learned compassion.

I think compassion is something learned and you can only learn it by experience (I don't know maybe some people naturally have it). But the people who have helped me the most this past year is people who have experienced a similar trial in their life. A woman in my neighborhood who has lost a couple babies showed me so much love and compassion. One day I was struggling really bad I wouldn't put Leah down and I completely stopped eating. She showed up at my door no phone call or anything and brought me tons of fresh food. She looked me in the eye with pure compassion, she knew exactly what I was experiencing. She didn't know I had stopped taking care of myself and stopped eating but, I knew she was God sent. She made homemade wheat bread with homemade jam, fresh veggie plates, fruit plates, dinner etc. Tons of food that lasted days. My body was replenished and I was able to fight the battle again. I will never forget that.

Throughout my whole life I wanted to always be a compassionate person, I always want to help others in need. I thought I was a compassionate person until I experienced this trial. I have now learned true compassion. I am so grateful for my trial because I now have this wonderful attribute!

As a mother I have always wanted my kids to be compassionate people. I found out a couple months ago that they have learned compassion. Last Spring, Trent's second grade teacher pulled me aside and told me that she is so thankful for Trent and what he has done for Katie this past year. She continued to tell me that Trent helped Katie every single day while all the other kids ran off doing their own thing. My eyes teared up and my heart melted because Katie has Down Syndrome. That is the best thing a mother could hear. I am so proud of my son!

Sometimes I feel bad that my kids have to experience such a hard trial in their life. But, this trial is molding and shaping them into beautiful children. They don't judge other kids, they accept every one for who they are. They are strong kids and they now know that they can do anything they put their mind to and the most wonderful thing is they have the most beautiful hearts!

Today I am grateful for:

My kids!

I am so lucky to have four beautiful children! They make me so happy! Lauryn is so sweet (with a little sassy). She is very witty and knows how to have fun! She is always thinking of others! She loves kids. My friends love to have Lauryn around because she plays with their kids and she is a big help. I love how much she loves animals. One day I need to fulfill her dream and get her an animal. My Trent has such a kind heart. He is very mellow and goes with the flow. He is a teachers dream. He always follows the rules, he almost always gets straight A's and he is very respectful. Trent is an amazing artist and athlete. Tyler is wild and crazy but still listens and obeys. He is our entertainer! He says the funniest things and makes everyone laugh. He also knows how to have fun (Lauryn and him really play off each other). He makes all of us so happy! Leah is our pure angel...she just glows! We hope and pray to get to know this little girl someday! I am so thankful for all of them and what each of them bring to our family! I love them so much!

Reality

My goal this month was to write a daily post of what I'm thankful for. Sadly enough...I think I set too high of a goal. Writing on this blog daily just doesn't happen. Reality is...I am hardly ever on my "A" game, I struggle daily just to function. I have four children that demand every second of my time. Life is hard. It's hard for all of us...we are all fighting our own battles! Anyway, enough said! There's always tomorrow. That's what's so wonderful! So for now on I will write on this blog when I can and I will be happy with what I can do!

Today I am grateful for: 

Chad

I lucked out big time marrying this guy! I am so thankful for him in my life! He puts up with my moodiness and my many weaknesses! He never dwells on the past, he is so forgiving and kind! He always puts us first and works so hard to give us a wonderful life. He encourages me to get out of the house and go to dinner with friends, get a massage or go out shopping! He never complains about anything! He loves his kids and spends all of his time making sure they each get their attention. He takes Lauryn on dates and plays baseball and football for hours with the boys. When he comes home from work he immediately plays with the kids all night and helps put them to bed. He spends the rest of the evening with me and then when I finally zonk out he stays up late getting his work done. He is such an example to me of working hard and never giving up! He always looks at the positive in life!

Happy 15th anniversary Chad! I love you!

A month full of gratitude!

Fall is my favorite time of the year! I love the crisp air, the leaves changing colors and thanksgiving! It's a time when we really count our blessings, spend time with our family and eat good food! During the month of November I want to write a daily post of what I'm grateful. I truly believe if we always have gratitude in our hearts we can be happy.

Today I am grateful for:

Leah

I knew I was suppose to have this little girl! We are so blessed to have her. Our family wouldn't be complete without her. She has changed all of our lives...forever. She has taught us so much.  I love her very much!

EEG results, more testing.

Leah went to Dr. Longo last week (metabolic/genetic doctor). He said Leah is a rare case and a mystery. He said almost all genetic tests have already been ran. He wants Leah checked back into the hospital to run a few more tests. He says there's one syndrome that is lining up that Leah could have. If it is this syndrome then the outcome isn't good, but we don't go down that path until we have to. We have been worried about her having a genetic disease that could be pass down. He confirmed to us that Leah doesn't have any genetic diseases that was a cause of bad gene's in the family and that nothing will be passed down. Whatever Leah might have is a result of her own body.

She also went to Dr. Inman, an immunologist. She is also going to be running some tests. Leah also went to Dr. Young (eye doctor), her eyes look great. Some good news!

Leah's EEG was not good. She is having multiple seizures in the right frontal lobe of her brain that can only be seen on an EEG. She was started on seizure medication right away, she is actually doing very well on this medication.

Our emotions get going again when we have all these doctor appointments.  We really would love for a doctor to just say "Leah has this condition and here is a medication to treat it" and bam Leah comes back to us and life continues. Not reality right? I think it's okay to dream sometimes. Man...I really miss that little girl!

She did have a day of lots of smiles last week. God knew we needed it!

Heaven sent!

These pictures were taken the morning after Leah was born. I was exhausted after having her so I didn't look my best at all. But this photographer captured such precious moments. When the photographer was finished she came back later that day with a slide show of all the pictures done with music. I (of coarse) balled my eyes out and said I would take it all. They really know how to get us moms. My bill was very expensive but worth it all. I am so grateful I got every picture because I unfortunately don't have a lot of pictures of Leah before she got sick so to me these pictures were heaven sent!

Move forward!

Moving forward is one thing I've learned his year. I had a conversation with my eleven year old daughter Lauryn yesterday. She was upset because her book report was due the next day and she had only read half of the book and needed to read over 70 pages and write an essay about the book. I'm sure this has happened to many of you and your children (we all have done it right?). She wished she had read more each night through out the month. We all have so many things that we wish we would've done in the past. I told her the most important thing is to learn from it, move on and don't look back. Dwelling on the past is no good, learning and moving forward is all we got to do.

Therapy is over...for now.

Leah's "Now I can" therapy is over. The four weeks went by so fast. It was an amazing experience. Leah's body now has good structure (she's not a wet noodle anymore). She can hold her head up for about 10 seconds, she is doing awesome. She worked hard every single day.  The therapist taught me and Chad some therapy to keep up with her. It was a little hard to get the positioning done right but now I'm doing better and soon I'll be a pro. We learned SO much there and we are so excited about the future. Before this session of therapy I was so sad I didn't know how to help Leah progress and now I feel so powerful, like I can do anything to help her. The therapist there are amazing. They give us so much hope! I want to thank our wonderful parents and my sister who helped us take Leah to therapy we could not of done it without each of you. We love you guys! We will be continuing therapy at home with her until next March. That's when we will start another session.

Ty & Leah

It's Ty's 4th birthday today! I wanted to share a little about Ty & Leah. Tyler is quite the little boy, as many of you know. He is FULL of personality!!! He is very big for his age, he has been off the charts since he was four months old. This kid has a huge butt and major thunder thighs (football material). He is a natural athlete. He is mister social, the king of the crowd!!! He is always happy and makes everyone laugh. We couldn't imagine our life without him. I know Tyler was suppose to be in our family to help Leah. He protects this little girl like you wouldn't believe. He is so rough and tough but when it comes to Leah he is so loving and gentle. He loves this little girl. He kisses and hugs her all day. Whatever happens to Leah in the future she has a big brother to protect and love her! We love you Ty Ty!!!

Fevers???

Each time Leah has a tooth come in or gets sick she fevers for four weeks. Why? Is the BIG question right now. She just ended a four week fever cycle and of coarse she seized for four weeks (It was a molar this time). The fever ended last Friday and therefore her seizures also ended. Again, she only seizes when she has a fever. We spoke again with our neurologist and he says that medication usually doesn't work with febrile seizures (which we pretty much knew). He wants another MRI (probably not until she's 18 months, it will show more than) and another EEG (that will be scheduled ASAP).

These cycles are stressful and really wear on Leah's body... So we are investigating why. We have spent many hours researching, talking with doctors etc. Now we are looking into immunology, we are wondering if she has an autoimmune disorder. Dr. Hornyik is talking with some immunologist and trying to get us in. We have an appointment in December but earlier would be better.

Seriously...my stress level is through the roof. I am trying to figure out my baby's condition, raise three other kids, work and build a house. Playing the balancing act is hard. I'm trying to be a good wife and mom but my emotions are all over the place. I'm just taking each day at a time, that's all I can do!

"Now I can" therapy

 I know what you are thinking "what in the world does she have on?' This is as suit that has bungee cords on it so she has tension on her muscles at all times. The astronauts wear these under their space suits.

This is Sergio her physical therapist. He is so awesome with Leah.

 She usually cries the whole time. She is not in pain, she is just not familiar with her body feeling this way.

 This is called the spider cage. It helps her hold her head up and learn to sit up.

 WOW!!! She looks so frail. These are tension bandages to help opposing muscles relax.

Therapist say she works harder then most kids. 

Bladder Infection

Leah had a bladder infection a couple weeks ago. This is Leah's second bladder infection so Dr. Hornyik wanted Leah to get her bladder and kidneys checked at Primary Children's hospital. Her bladder was okay but kidney's needed to be looked at by a nephrologist. The doctor said her kidney's look like the result of being on the ketogenic diet. They are okay but need to be checked again in a few months. I take Leah in tomorrow to check to see if the antibiotic cleared up the infection.

Being Strong

I have people say how strong I am. I really don't consider myself a very strong person. I believe anyone can be strong with the right attitude and will power. Somedays I have it...somedays I don't. But I always fight to keep my head up!

Beautiful heartbreak

My very best friend Carisa emailed me this video. These words are exactly how I feel. My heartache turned my life into a beautiful view.

Sisters

Lauryn wanted me to post this song! It reminds her of her sister and the love she has for her. Lauryn had a special bond with her sister and she knows one day that bond will be back!

My kids asked us about death yesterday and I loved what Chad told them-

"Everybody dies, but not everybody
really lives".

Our love!

This song is so beautiful! It's called "Our love" by Paul Cardall.  The love in our family has been forever changed by this little girl. She truly has taught us how to love each other. This song reminds me of the strong love that is in our family.

Acceptance

Chad and I have experienced so many emotions this past year. A lot of the emotions are the stages of mourning. We have felt anger, bitterness, denial, sadness etc. I think we have now entered acceptance. It's a good place to be after feeling so much pain. At times the pain has been unbearable. But we know that this is the life that Leah was given. As much as we want a different life for her this is what's meant to be. We accept that! She is still very young and things can turn around for her but this is where she is at right now and it's going to be okay. We don't have answers and we don't know her future but we do know that God knows and we trust him. He knows what's best for her and we need to accept that! We love her and we will continue fighting for her to have the best life possible.

Teething...again!

This teething thing seriously stinks! Leah now is having many seizures a day because she is experiencing high fevers. Leah's fevers are high and very hard to bring down, I've never had a child like this. We are back to her being lethargic. She has stopped crying and moving again. So sad...I miss her smiles and laughter so much. Its been about two weeks now and I miss all the things she did before these teeth decided to come in. We hope she is better by next Monday September 17th, that's when she starts intense therapy!

Forgiveness

Forgiveness has been a long road for me. I have blamed myself for Leah's sickness for about the past eight months, a long eight months. It's been a very hard burden to carry. Blaming myself did nothing but tare me apart. As humans I think we feel like something or someone is to blame for anything that happens. But, there are accidents that no one is to blame. It took me a long time to learn this concept. I actually wanted to be blamed (I know that sounds stupid but until you have experienced what I have experienced you can't understand). I had a sick feeling inside to not give Leah her immunizations on Dec 30th 2011 and I ignored it, I thought I was just a scared mom not wanting my baby to get shots. I didn't know what to do and I didn't know why I was feeling sick inside. Chad and I talked the night before about her immunizations and we decided together to go ahead and do it.  I truly didn't know I was going to "loose" my baby that day and that those immunizations would change her life and our life forever. Everyone immunizes their kids! No one thinks that those shots are going to take their child away. So I proceeded to have her shots done still feeling yucky inside. Well...I forgive myself, for the first time I can say I forgive myself. It wasn't my fault, it wasn't my doctors fault. It was an accident! I will not let those feelings of blame enter my thoughts again. Those feelings are dark, damaging and make you feel trapped and alone. What a wonderful feeling to feel free and not carry such a heavy burden!

I choose to let it go!

Giggles!

Leah has giggled many times. Some giggles have been random, laughing at no one and some were us trying to make her laugh. We caught one on tape, I will cherish it forever! Please don't make fun of my laugh I was just so thrilled to make her laugh.

http://www.youtube.com/watch?v=amamBO7EVWI

More Seizures...

Last week was a really hard week for Leah. She has four new teeth coming in so therefore she has fevers which result in seizures. The worst day was last wednesday she had ten seizures. She would seize fall asleep and wake up only in another seizure. Really scary....She finally started getting better towards the evening. Chad and I had tickets to the concert 311 and we really were nervous to leave her but we decided she was okay with grandma and we really needed a night out. We had a great time. We went with one of Chad's friends from work and his wife. We were right by the stage dancing all night. It was like we were in college again. It was the best therapy for us!

The couple we were with that night also have a special needs baby. She only has a half a heart. She is ten months old and has had many surgeries. She is doing well but she won't have a long life, she can pass away at any moment. Her mom and I had wonderful conversations about being parents of these special girls. We both have experienced many of the same emotions. It's been a hard road for both of us and it was nice to know someone else knows exactly what your going through.

Two seizures!

I needed this today! Leah had two seizures today! The pain of watching her seize is unbearable at times. I truly don't know how I made it through four months of daily seizures. It was through prayer and the prayers of many others that God gave me strength every moment of every day. I question all of this heart ache daily...why me? why her? why seizures? Why couldn't it happen to me and not her? It's been a sad day, it's especially hard on my kids. They say to me "mom, I thought her seizures were gone! Why is she seizing again and why can't she be normal". It breaks my heart to see them sad and hurt. They love their sister and all they wanted was for her to play with them. I have no answers for them. All I can say to them is stay strong and never loose hope. Yes...we had many dreams for this baby girl but God has a better plan for her.

Now I can!

Leah will be starting a new physical therapy program called "Now I can" on September 17th. It is the best physical therapy in the state of  Utah. Dr. Humphery's told us about this program, he feels Leah needs intense physical therapy. Leah still has a floppy neck and she needs to develop coordination.  This program is designed specifically for children with neurological problems. The program is in Provo and it's five days a week, four hours a day for four weeks...very intense. Our life will be put on hold for a month...but we can't wait!

We keep receiving many blessings in our lives. We found out the program cost $6,000, we were very ready to pay it. We are building a house (I know we are crazy and we might be putting fuel on fire but we need a bigger house and interest rates are awesome. It might not be the best time for us but oh well here we go!) so anyway we were ready to put the new house on hold to pay for this therapy. We soon found out our insurance covers the program 100% we just have to pay co-payments. This is rare to have insurance cover this much therapy. We are so incredibly grateful!

Happy 1st Birthday!

August 8th was Leah's first birthday. We sang happy birthday to her many times that day and gave her apple juice for the first time. She took a sip and looked at us like "what in the world is this"...after a couple sips she began to like it. We didn't do the usual first birthday party full of presents and baby diving into a cake. But...one day we will.

One thing that happened that day was that Leah giggled...and it wasn't us trying to make her laugh. She was looking to the side and smiled and belly giggled to no one. Well, it was someone. An angel probably visited her on her birthday and must of made a funny face!

She found her voice!

Here is a video of Leah talking. She talks to us and talks to herself when she is in bed. It's the best sound ever.

A big smile!

We got it! We got what we've been waiting for a SMILE!!! She is cooing, kicking her legs in excitement and putting her hands together. She is also starting to want to put things up to her mouth. We are thrilled!!!!

Dr. Filloux

We finally got in to see Dr. Fillox (pronounced Few), he is the head doctor in pediatric neurology up at Primary's. He saw Leah up at Primary's when she started the ketogenic diet and we really liked him. He was happy with Leah's progress. He was shocked that the diet stopped Leah's seizures (it is very rare for the diet to stop seizures). We know that we were led to the diet and we are grateful everyday that God continues to take care of Leah and our family. Anyway...back to the doctors appointment. He is ordering another MRI and EEG for Leah, he wants to make sure everything looks good. He doesn't feel she has any disease or disorder associated with seizures. He feels if she did she would be seizing still and we basically have already checked for almost all diseases associated with seizures. He feels there's a 25% chance she may have a genetic disease not associated with seizures. He is going to do some research and see if there's any other diseases and disorders to check for, again not related to seizures, but maybe more the nervous system. Chad told him "Doc I really need you to think outside the box". Dr. Filloux agreed that Leah is a very rare case and that he will do some studying and get back to us. This is what we need...this is what we've been wanting and waiting for...a doctor that cares, wants to help and is willing to study and "think outside the box". We went through many many neurologist to find one, one single person to help us. Good doctors are very very hard to find. Anyone who is reading this PLEASE don't settle on the first doctor you see, always always get second and third opinion's. I know I've said that before but I can't stress enough how important that is.

Much love for special needs parents!

Words can't even describe the feelings of compassion I have for the parents who have a special needs child. I never thought I would have a special needs baby, nobody knows they are going to get one of these little angels. When was pregnant I thought I was going to get a healthy baby girl. To my surprise that wasn't the case. This story describes my feelings when Leah got sick.


WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

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

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

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

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

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

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

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

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

  




As hard as it's been to be in "Holland" I wouldn't trade how it's changed my life for anything. I am more of a compassionate person, I am stronger, I am patient, I don't judge others, I have more love for everyone around me.  I am a better wife, mother and friend. I will thank her everyday of my life for giving me this gift!

Sugar...

Leah's appointment with the nutritionist went well. She was happy with her progress. Today Leah gets sugar for the first time in four months (her diet didn't have any sugar and very little carbohydrates).  We are slowly adding carbohydrates back into her diet. In three weeks she will officially be off the diet. We truly know that the diet worked for her and stopped her seizures but we also know that it's time to go off it. Leah will probably have a seizure when she gets sick and runs a fever but at least now she won't have seizure after seizure. She most likely will grow out of the seizures by two years old.

Paula (she is the nutritionist and nurse practitioner in neurology), apologized to us that they never found anything with Leah and that she doesn't have a diagnoses. We continue to tell them that we are happy they didn't find any horrible disease. We can live without a diagnoses. We KNOW Leah is going to be okay. Yes, because of this set back she may have some physical disabilities down the line.  Then again, maybe she will just catch up one day. We can handle anything!

Leah was in a comatose state for three months. She lost almost everything, thankfully she never lost her will to eat. She is the most amazing little girl. She fought for her life every single day and continues to fight. I wish everyone could feel of this little girls spirit. There are not very many people on this earth that have this will power to live. I see her (our Leah before she got sick) in her little body fighting to come out. She works hard every single day. She gets so upset because her body won't do what she wants it to do. I will do everything in my power to help her reconnect.

I love being her mom. Anyone who knows me knows I like having a clean organized house and I like having my hair and makeup done nice everyday (thats the hair dresser in me). Well...all these things don't exist in my world right now. My house is barely making it and I look like a mom who puts her baby and other kids first. I am happy and I am loving living in the moment!

Progressing...

Leah is doing well! She is moving her arms from her shoulder and kicking her legs. We didn't get any smiles this week...we hope for more soon! Her head control is getting better along with eye contact and tracking. She is moving along, we wish it was at a faster pace but progress is progress and we will take any of it.

She has been on vitamin B12 for a week now. She doesn't cry when we give her the shots, the needles are so tiny she barely feels it.  We are starting to see a difference in her motor skills, which is why we are giving her the vitamin B12. The doctor said it would take about a month before we see a big changes in her motor skills. We are crossing our fingers it helps a lot!

We meet with the nutritionist on Monday, we will be discussing the next step for Leah. I will post what we find out.

We got a smile!

We got what we have been waiting for...a smile! She started smiling last friday. She doesn't freely give out a smile it takes some work, but it's so sweet! We hope to catch one on camera so we can post it.

Going off the diet!

Chad and I made the decision to take Leah off the diet. Her blood work shows she still has high levels of calcium. When she has these high levels she goes lethargic and sleeps a lot. We were warned by her nutritionist that her body can't continue having these high levels. They keep adjusting the diet to help keep the level down but it continued to stay high. Well...we are at the end of the road, they can't make anymore adjustments. So through the next couple of weeks she will slowly be taking her off the diet. Through lots of prayer we really feel good about this decision. We truly know that the diet worked for Leah, it helped end those terrible months of seizure after seizure.

What's the next step for Leah? We feel that Leah needs the best nutrition. As her mom I would do anything for that little girl. So... I am going to try to nurse Leah again. When Leah was born she was a good nurser and continued to nurse very well until she got sick. When Leah got really sick in January I was devastated. I got so stressed I lost my milk. Well...after 6 months I am going to try to get it back. I have spoke to a lactation specialist and she said there's a good chance I can get it back. It will take a lot of dedication and hard work but it's worth a try. She said I have a lot of things going for me: I successfully nursed four kids and I abruptly stopped nursing because of stress and didn't wean her. I am taking lots of herbs and pumping a lot. Wish me luck...I need it!!!

Tonic seizure/Bladder infection

Well...Leah unfortunately had a tonic seizure last Monday night. It made for some sad anxious parents! I cried myself to sleep that night. I honestly don't know how I made it through the days she had ten seizures a day. The doctors warned us that Leah could continue having seizures when she gets sick or has a fever. The next morning Leah had a high fever and cried a lot, I knew something was wrong. We took her to the doctor the next day and found out she has a bladder infection. Poor baby! Today, she is doing much better thanks to some good antibiotics.

Tests results!

After waiting three long months we finally got Leah's tests results back for genetic and metabolic diseases. They came back normal...what a relief! Leah's doctor said "How are you doing with those results" I told her I am so relieved. She said those are all the tests we can do... it must be hard to not have any answers. Not having answers is the worst torture! But to know that she doesn't have a life threatening/ life altering disease makes me feel that we can fight this and that she does have a chance at a great life. Having those test results come back clear means that maybe she can outgrow this one day.

Vitamin B12 shots...Ouch!

We saw Dr. Humpherys Monday.  It was a good visit. He was able to review her medical records and found some lab work that was done when Leah was two months old in which she had a lot of high acid levels in her body, the doctor up at Primary's disregarded the high numbers. Dr. Humpherys feels those numbers shouldn't have been disregarded. He is now starting Leah on folonic acid for four weeks then adding vitamin B12 shots. We will give her the shots every three days. I have never given anyone a shot! Luckily it goes in her bum and she won't see who gives her the shot! He said if this is the right thing for her we should start to see her motor skills greatly improve. He is very confident in the treatment but says if this one doesn't work he will move to a vitamin B6 treatment and after that maybe pressure chamber.

Unfortunately Leah has continued vomiting. Chad and I figured out why Leah is vomiting, it's the protein powder that was added to her diet two weeks ago. The protein powder is milk based and she is sensitive to milk. She needs soy based. So today we started soy protein powder. Cross our fingers it works well with her system. Paula, her nutritionist wants Leah to get blood drawn again next week to see if her calcium levels have improved. Paula said if they haven't then Leah will probably have to be weaned off the diet soon. This really scares us! But, we have full confidence in Dr. Humpherys to take care of Leah from that point.

Therapy was great yesterday. They assessed Leah and she is considered a 1-2 month old with some 3-6 month behavior. Her therapist haven't seen her in two weeks and they were thrilled with her progression. They have full confidence in Leah's recovery! We are in the process of trying to get some private physical therapy for her. We just have to do as much as possible for her!

Leah has some awesome break through moments. We see her in there when we have these experiences. They are not everyday but we are seeing them more and more. We hope it continues.

A little scare!

Last weekend Leah was really sick, she was vomiting and had diarrhea. One night when I went to check on her in bed she had thrown up and wasn't responding. I called for Chad and he tried to get her to respond...nothing. We called 911 and just before they got here she started to respond. When they put oxygen on her she then began to come out of it and started to cry. Her vitals were fine and she started to act herself soon after. We don't know what happened, maybe a seizure...maybe not. She didn't act like it was a seizure she acted more like she was in shock! She scared us so bad. How many lives does this little girl have? She is so strong!

This past week she has moved her head more and is moving her arms with full extension. Her hand eye coordination is improving. She is starting to touch toys, bring her hands to her face and bring her hands together. Her head control has really improved, thanks to lots of tummy time! Now I just have to get her to the point that she doesn't scream bloody murder when I put her on her tummy. She also is trying to hold the bottle when we feed her. She is continually showing more emotions, we are finally starting to understand her cries. Since we have seen more emotions recently we hope this leads to a smile one day. We can't wait for that day, we talk about it all the time.

The brain really takes a long time to recover. A nurse that Chad works with really helps us put things in prospective. She was in an accident and got brain damage. It took her a year to learn to walk again and now she runs a doctors office. She tells Chad to be patient and never give up. She gave us the book "The Secret". If you haven't read it I highly recommend it. She gave it to us at a time when we really needed it, it helped me so much.

She continues to have high calcium. They changed her diet again, they got rid of RCF, which is a soy formula that gives her too much calcium. They also added more protein, more carbs and more water. They want her to gain more weight. She is on a 2.25 ratio instead of 2.50 because her seizures have been under control.

We look forward to seeing Dr. Humpherys tomorrow. We can't wait for him to see her improvements!

Our parents!

I am so grateful for my parents and Chad's parents and all they have done for us. They have been there for us every minute of Leah's sickness. They watched our kids countless times, made us many many meals, went up and stayed with Leah in the hospital when we needed family time. We couldn't ask for better parents!

Leah went to see Paula her nutritionist this week, she is also a nurse practitioner in neurology so she does all her examinations. She is very pleased with Leah's progress she said that developmentally she acts like a one month old. Leah had more blood tests, her calcium continues to stay high so Paula changed her diet again. She now is on a 2.25 ratio instead of a 2.50.

Leah is showing more expressions on her face. She is progressing very slow but progressing. She is doing things that she did when she was a newborn. We just love that little girl!

My friends

My best friend Carisa is moving out of the country tomorrow. It's been a little emotional for me because she has been there for me since I was in junior high. She knows me so well and has really been there for me during this hard time with Leah. I will miss her so much! Luckily it's only a temporary move!

I am so grateful for all my friends! I truly have the greatest friends. My friends from childhood, junior high and high school have really came back into my life, it was like they were never gone. When they found out about Leah they instantly came and helped me. I love each of you and thank you for being there for me. My friends in my neighborhood and from my work I thank you for all the meals and for watching my little Ty when Leah has been in the hospital. I can't thank my friend Regina enough for taking Ty every week during Leah's therapy.

Thank you for all the encouraging texts and all the phone calls just to say you are thinking of us! I love each of you very much!

When Leah had her second tonic seizure I was at the grocery store. Just minutes before her seizure I ran into a childhood friend I hadn't seen in years.. We stood there talking and all of a sudden Leah started seizing I grabbed her and started crying and whispering to her come on baby take a breath. At that moment when she wasn't breathing I wanted to run down the aisle screaming for help. Instead my friend stood there hugging me telling me over and over she's okay.  Jill then helped me check out at the store. It wasn't a coincidence I happen to run into her at that moment. God really does use people to help us.

Loose muscles!!! Yay!!!!

I wish I was a everyday blogger...I guess I'm just a weekly blogger. Life with four kids, traveling husband, working mom makes it such that I can only blog once a week.

Our life with Leah is a roller coaster, some days are up and some days are down. She is still teething. She fevered last week and did have a few seizures during the night. They were not tonic seizures but it made for some sad faces around here.

Her muscles have loosened!!! We are so happy!!!! She is moving her head and fingers and toes. It's so beautiful to watch her little fingers and toes move I could watch them all day long. We hope for some hand eye coordination soon. She looks for me and checks in with me when her therapist works with her. Her therapist said that's such a wonderful sign.

Thank you again for all the prayers!

Goodbye Keppra (seizure meds)!!!!!!!

Leah is officially off her seizure medication, that medication completely sedated her. Medication can be so scary. We are so happy we never ended up adding another medication, she really would have been more glazed over. Chad and I are going to take the bottle of Keppra out to the desert and shoot it over and over. Sorry that sounds violent and we are NOT violent people but we hate that a drug took our daughter away from us.

It's been a long week. Chad was in California all week and Leah has her two front teeth coming in. She has been miserable and I really missed my husband. Leah had a couple small fevers this week and never seized. Incredible!!!

Leah's muscles get really locked up, we do therapy three times a day to help loosen them. We pray her muscles will make a connection to the brain and her brain will make a connection to her muscles. That has been a really big concern lately. We are so grateful for all the prayers for Leah concerning her seizures and God listened. Her seizures have stopped, it truly is a miracle! As her mother I humbly ask to please continue praying for her and her recovery.

She has moved her legs more this week and has held her head up a little more! Progress is slow but she is making progress. We as humans want more we always want more and more. We have seen a new look in her and I am truly grateful for that but I want my baby back the way she was before she got sick. I miss her so much, my heart aches everyday! I need to be more patient and continue the fight of hope!

A new light!

We see a new light in Leah's eyes! The past months all I've wanted to see in Leah is the light I saw in her eyes the first five months of her life. I have deeply missed this connection. I now today and the past few days have felt that special connection with her. She is with us, we feel her with us for the first time in four months. It's absolutely beautiful!

Leah is officially four weeks seizure free! She has had a few absent seizures (stares off into space for three seconds) but no big deal. It feels so good to take a breath! In the past when she seized it was so heart breaking. The pain of watching her seize and go blue and waiting for her to take a breath was unbearable. I cried every single time she seized, I never got use to it. I felt like I faced death 6-10 times a day, that takes an emotional toll on the body!

We are weaning Leah off her seizure medication. It is scary but we also know the medication never worked for her. Well...we have seen such an improvement in her since we have started the weaning process. First, like I said we see her. She is also moving her arms and legs more, eating extremely well (it use to take us over an hour to feed her) now she downs a bottle in 10 minutes, she is holding her head up while we burp her, she is responding to sounds, she turns her head to see who's talking. All of this progression is so amazing!

She now has an eye therapist. Leah did so well with therapy, it was the first time I've seen her put forth effort. Therapy has kick up a notch now that she is so responsive.

This week has been the best! We look forward to the next weeks and what is in store for this little girl.

My kids!

As I have continued reflecting back on the past few months I have thought of a lot of things that helped me get through each day. I want to continue writing about these things so that I remember them, so bare with me as my goal is to write about something each day until I can't think of anymore things.

Today is the new love and appreciation I have for each one of my kids! I thought I already loved them so much until I experienced this event that has made me love them even more. They are the reason that in the darkest moments I had I got myself out of bed and did my duties as there mother and showed them that even though I have a sick baby they are just as important to me. There were days of deep depression and I wanted to stay in bed, never shower and not want to eat. But I didn't choose that and it was a fight in my head every day to choose to not do that. It was harder to get up and continue life the best I could then lay there in self pity. My kids did that for me, they gave me the strength to keep going. As their mom I wanted to show them that when life throws you a curve ball you keep going and don't give up!

I love Lauryn for having so much love for her little sister. She always said "I believe in miracles". I love the faith that Lauryn has.

I love how much Trent cares so much for Leah. When he comes home from school everyday he asks "how many seizures has she had today?" It broke my heart when I had to say five or ten and see the sad look in his eyes. Now I've been able to say none for the past four weeks and I love to see the big smile on his face.

I love all the kisses Tyler gives Leah every day, he kisses her forehead all the time. He always says "I love you Leah". It just melts my heart!

Thank you Lauryn, Trent and Tyler for being the best sister and brothers to Leah. She is so lucky to have each one of you in her life.

My friend Gina gave me this saying today:

"Once you choose hope, anything is possible". -Christopher Reeve

Thanks GIna!

"We only get one life, make it good", this is Chad's new saying these days. The past month I've really reflected back on the last four months and who has helped me survive this time in my life. The first person I think of is Chad. He really is amazing! I couldn't imagine my life without him. He steps up to the plate and faces challenges head on. He is a MAN! He takes care of all the needs of his family, he puts us first ALWAYS! Chad is my best friend, he is always there for me. He knows how to make me laugh and he holds me when I cry. I wouldn't want to go through this with anyone else.  Thanks Chad for being who you are and being the best husband a girl could ask for!

Leah is doing much better now that her body is adjusting to the new formula and her calcium level is dropping! Still no seizures!

Eye doctor

We went to the eye doctor today and her eyes look great. The nerves behind her eyes are very healthy and her eye sight is great. The doctor said that she thinks Leah's tracking is ok, but it could be better. Leah is having an eye therapist come and help her track better.

We also had blood drawn to check a few things and her calcium is really high so they are changing her diet to help that. We are now friends with the tech's at the lab they are really starting to get to know Leah. I don't know if that's a good thing.

Leah is running a high fever yet again today (no seizures with it), and we have no clue why.

Each of us have our moments of missing the old Leah, especially when we see baby's her age crawling and playing. We long for those moments with her. Even though we don't get that right now it's okay because we get to have a special angel in our home. The feeling that she brings into our home is true gratitude, true happiness and true love.

Dr. Humpherys

We had the great opportunity to meet with Dr. Humpherys, he is a pediatrician and a naturopath. He is awesome! We told him Leah's story and he is ready to help us put the puzzle together to help Leah. He is having Leah's medical records sent to him and he will be studying her MRI's, EEG's etc. and then come up with a plan to help Leah progress.

 Leah is still not developing, that has been our major concern now that her seizures are under control. She got a 101 fever this past week and she didn't have a seizure, which was amazing! Leah's tonic seizures have been gone for 3 weeks now, but she is experiencing some small absent seizures now and then. The crazy thing is she is not producing ketones because they changed her diet so she could gain some weight and she isn't seizing. Go figure! This little girl is very confusing!

So our big question is why is Leah not developing now that her seizures are gone? Is there something else going on? We really need answers, it's so hard to live day to day with no answers. We need answers so we can move on no matter what the outcome will be. But, until then we will continue on and keep fighting until we find those answers.

Leah is going to get her eyes checked tomorrow to make sure there's nothing going on behind her eyes that is causing seizures and to make sure her seizures haven't caused any eye damage. She is also having more blood work done tomorrow.

A special thanks!

I just wanted to thank everyone for all your prayers for Leah and our family! We appreciate all your love and support. We know that this road of recovery is going to be a long, but we are ready for it and we will include everyone with each milestone she makes. So far, she is like a newborn and we are trying to get to know her cries. Still no seizures! We couldn't be more grateful.

8 days seizure free!

We can't believe it! She is starting to learn how to move her body again. She is looking better everyday!
Life is getting a little bit back to normal and it feels so good!

4 days of no seizures! Yay!

Today Leah has been seizure free for 4 days now. Yay! We are so happy! She is eating a lot and sleeping a lot these past few days. She eats so good and starts crying right before the next feeding letting us know she is hungry. She is napping twice a day with no seizures. In the past we would hold our breath watching her wake up because she always seized coming out of sleep. She now is going to sleep and waking up like a healthy baby,  it's so beautiful to watch. She is also moving her arms, fingers and toes more. Today, she took a binky for the first time in three months.

A special Easter gift!

On this Easter Sunday I am so humbled to say that Leah is on her 6th day of doing very well! A couple of months ago I had hoped and dreamed that by Easter she would be on a road of recovery and here we are...It makes me very emotional to say that I think we made it to that road! What a special Easter gift given our family! We are so incredibly blessed at this time.


“God is eagerly waiting for the chance to answer your prayers and fulfill your dreams, just as he always has. But he can't if you don't pray, and he can't if you don't dream. In short, he can't if you don't believe.” ― Jeffrey R. Holland

Another AWESOME day!

No seizures!!!! Yay! Nothing but happiness is in our home!

Happy day

It was a great day today. No fever! She has ran a fever for almost 3 weeks. Today was the first day she hasn't had a fever and it was an awesome day. She drank all her bottles today and she drank them like a healthy baby (a strong suck and no dribbles). She cried a lot today (that's a good thing), she gave me great eye contact and she moved her arms and fingers! The crazy thing to all this is she has had small ketones all day. We think because the dietitian changed her formula to have her gain some weight and it's making her produce small ketones...just guessing!

We have come to a conclusion that fevers stink!!! They really threw her off track for the past 3 weeks.

Chad and my older kids do jiu- jitsu and they are taught to have an indomitable spirit. It is a good theme to have when facing challenges. You must not give up. Even if you lose, you get up and fight again. We now have that as the theme in our home.

Leah keeps running low grade fevers, so we took her to the doctor to get checked and it turns out that everything's ok. She has a huge terrible canker on her tongue, she is biting her tongue during seizures now. It's so heart breaking. Sometimes her mouth is full of blood after a seizure. We sure hope she gets a break soon!

Good news!!! We got an appointment to see Dr. Humpherys, we are so excited! Our appointment is April 21st. Thanks to a wonderful person who worked very hard to get us in! Thanks Jessica, you are amazing!!!! Dr. Humperys is a Naturopath, he has helped so many children!

Leah has had some wonderful moments and some not so wonderful moments the past few days...we choose to ALWAYS concentrate on the wonderful moments.

Gordan B. Hinckley said:
It isn’t as bad as you sometimes think it is. It all works out. Don’t worry. I say that to myself every morning. It will all work out. If you do your best, it will all work out. Put your trust in God, and move forward with faith and confidence in the future. The Lord will not forsake us. He will not forsake us. … If we will put our trust in Him, if we will pray to Him, if we will live worthy of His blessings, He will hear our prayers.

Leah finally got in her two bottom teeth . Wow... it was a long week! She fevered every day and averaged 7-10 seizures a day. She was so tired and didn't eat good. It took me and Chad an hour to feed her at each feeding.

Today was a good day, her fever stopped. She ate so much better and she let out a good cry at the end of the night!

The nutritionist said it could take up to two months to get Leah's seizures under control with the diet. Leah is on a 2.5 - 1 ratio of the diet, we will slowly work up to a 4 - 1 ratio. Because she is so young they didn't want to put her on the full ratio yet. We think when she is around one they will put her on a 4 - 1 ratio or close to it. Patience is the key!

I saw this today:


FAITH makes things possible...not easy!

One tooth broke through...another on it's way! It's been a long week.....

While Leah was in the hospital last week they took more blood to do a panel of DNA testing, they are looking for more genetic and metabolic diseases or disorders. Those test results should come back in the next 2 weeks.

Lots of febrile seizures = Very sleepy baby

A daddy's love!

Chad is an unbelievable daddy! He loves Leah so much.  He is a silver back gorilla when it comes to protecting his baby! He never leaves her side when she is in the hospital. At home in the night he gets up and checks on her constantly. The baby monitor sits right by his ear at night so he can hear every sound she makes. He hates leaving her in the morning to go to work and it breaks his heart to leave her when he has to travel.

He is the most selfless person I know. He gives and gives and gives to us! He is ALWAYS positive and happy! He NEVER gives up. We are all so lucky to have him in our life. We love you Chaddy!!!!

Well...we think Leah is having lots of seizures because she is teething. She has been running a fever. Poor little girl!!!!

Yesterday Leah ended up having six seizures and four today. It's been a hard couple days for all of us!

Therapy day!

Thursday is therapy day for Leah.  Becca comes and works with Leah and teaches me what I can do to help develop Leah's motor skills. We love Thursdays at our house! Becca is so positive and I love learning new things to help Leah. She did well today. She showed Becca lots of emotions, which she never did in the past.

Leah's seizures come only when she is falling asleep and waking up. When her left brain and right brain cross over something is back firing, which causes seizures. They don't know why this is happening, which is very frustrating. Not having answers is very hard! There is a good chance she will grow out of her seizures. Who knows if or when...but we pray she will.

This blog is great therapy for me, I want to write something everyday. Even if it's just a one liner, a quote for the day (to help me) or of coarse information on Leah.  I don't consider myself a great writer but I do this for me, my family and friends. One day I want to make it into a book for us to have to remember this time in our life.

Quote for the day:

Attitude is a little thing that makes a big difference.  ~Winston Churchill

Today we went to the hospital to get some labs done to make sure Leah's body is still handling the diet well. Saturday was Leah's best day, she had large ketones that day (we check her ketones 3 times a day through a urine sample not the best job but we do it). After Saturday she has only had moderate ketones, yesterday and today have been okay days for Leah. We hope her body will start producing large ketones again soon.

Last Saturday was awesome, we saw our old Leah. It's hard on me when she has bad days after a great day. I just want those good days to keep going. But...we focus on the good days and keep going. The negative can eat you up all day long if you let it. Every morning my goal is to think positive and always be grateful.

We mix up Leah's formula every night for the next day. It's quite the process, we have to weigh on a scale about 4 ingredients and mix it up. We test Lauryn and Trent's math skills and have them help us. Her formula costs around $350 dollars a month, thankfully our insurance covers it 100%. Another wonderful blessing in our life.

Leah cried today!!!

Here is the video of Leah crying today. We all cried! It was the most beautiful sound...what a blessing! FYI Leah hasn't cried in over two months!!

Leah's home!!!

We are so excited to have Leah home. She is doing really well, we have noticed a few things about her. She let out a little cry last night, her eye contact is great and is eating well. We are so grateful she doesn't have a feeding tube. She is a fighter, I have never seen a baby fight for their life as she has. She is amazing!!! We look forward to great days ahead of us.

We think we found a new neurologist today, he is very genuine and positive. I just want to say never never settle for the first doctor. There are so many doctors out there, some really good ones and some really really bad ones. ALWAYS get second and third opinions. If you search you will find the one for you. I believe as mothers and fathers we know what's best for our children they don't. I want a doctor that believes in mother intuition and listens to what we want for our children. One more thing, make sure you are in control when dealing with doctors. Don't let them control you because they sure love that power. Sorry...I had to get that out!

24 hours on the diet

Leah is doing well. She has been on the diet for 24 hours now, her labs are coming back good. She is taking the formula well. Her body is just starting to go into ketosis, for those of you that don't know what ketosis means it means her body burns fat for energy. She probably won't be fully into ketosis until tonight or tomorrow. Chad and I can start to see something different in Leah we can't pinpoint exactly what it is but we see something and it sure feels good.
Thank you everyone for your kind words, prayers and support. We feel it and it means so much to us!

Leah's story

Leah was born August 8, 2011 at 4:22 p.m weighing 7 lb 14 oz and 20 inches long. Leah was such a sweet newborn baby, she ate and slept well. She has such a sweet spirit and has brought so much joy to our family.

Leah grew well and began to smile. One day life began to change:

Leah at two months:

When we were at Leah’s two month apt her Doctor was examining her and said I think your baby is having small seizures. Before I knew she was rushed up to Primary Children’s Hospital in an ambulance. She had a CT scan, a spinal tap, blood tests, urine tests and a 24 hr EEG. They found nothing we were very relieved.

Leah at three months:

We continued with many doctor appointments and an MRI, still nothing found.

Leah at four months:

Leah had her first tonic clonic seizure. It was in December and I was sweeping my floors. Leah was asleep in her bouncer and all of a sudden I heard a weird cry and Leah’s face was froze and her body was stiff as a board, she was not breathing. I grabbed her and my cell phone and ran out my door screaming for help as I was dialing 911. I started running to my neighbor’s house with Leah in my arms. When I looked down at Leah she was turning blue I began doing mouth to mouth. When I got to my neighbors we layed her on the couch and I continued mouth to mouth. All of a sudden Leah wasn’t blue anymore and turned a very pale white color. At that moment I thought I had lost her. The ambulance came and gave her oxygen and Leah woke up. The paramedic told me that Leah had a seizure.  We went to Primary Children’s hospital again. They told us there’s nothing we can do. They already ran all tests and everything came back normal. They told us to go home.

Two days later Leah had another tonic clonic seizure at the store. It was very scary but I was a little stronger. She then continued having a seizure once a week. She still met all the milestones and started rolling, giggling and really playing with toys.

Leah at almost 5 months:

I took Leah into the doctor for a check up and everything went well. Leah’s doctor suggested waiting until she was 6 months for her immunizations I unfortunately disagreed and wanted her to get her shots. Her doctor said ok. We together decided to omit the whooping cough shot and did only single shots no combo shots. I remember like it was a nightmare the shots going into her legs I had a sick feeling inside.  At that moment I had no idea my life would dramatically change.

The next day December 31^st Leah went completely lethargic and started seizing over and over. We then decided to take her to Primary Children’s hospital. They admitted Leah and began a seizure medication. Chad and I celebrated the New Year at the hospital together.

January 1^st we went home and Leah continued seizing even on medication. The medication made her very sedated and the seizures made her very tired. Leah stopped crying, moving, playing and giving eye contact. We feel like we lost our baby girl. Lot’s of tears were in our home daily. Living in fear daily was a struggle.

A couple weeks later Leah’s pediatrician wanted her to go back up to the hospital and get more tests ran. They ran more blood tests for genetic and metabolic diseases. They did another in depth MRI looking for any diseases and brain damage. Everything came back normal. They did another EEG and found that Leah was having a seizure every 15 minutes in her sleep.  We then increased the dosage of her seizure medication.

Leah 6 months:

Leah is still having seizures (2-6 a day) Some days are better than others. She still hasn’t cried or moved. On days that she hasn’t seized we see a glimpse of our baby girl back. She tries to cry and starts to play with a toy. Those days help us get through the bad days. My days with Leah are very busy... eating can really take a lot of time depending on how many seizures she has had. We do therapy 2-3 times a day, I show her toys, pictures, feel different textures, read to her, massage her, listen to music and of coarse smother her in kisses.

Through a lot of research and prayers we feel strongly to treat Leah's seizures with the ketogenic diet. We have seen 5-7 Neurologists and they never once offered the diet to us as a treatment. We did our own research and brought it to them. They strongly suggested we add more medication instead of the diet. We disagreed and fought to get this treatment approved. It was so exhausting but we finally got it approved.

This experience with Leah has been very hard for us as a family. We have struggles every day, but we know we can get through this and fight for Leah's life back. We have learned that life is so precious.  We realized that we took our other children's health and our health for granted. Well...we will never take our health for granted anymore. We live life to it's fullest everyday, our relationship's with each other have completely changed. We thought we were a close family before now we are closer than ever.

We are so thankful for such brave children who give Leah unconditional love and help her every day. We are so lucky to have wonderful parents, sibling and friends who have helped us get through this difficult time. Your support, love, endless service, meals and encouraging words have meant so much to us. We love each of you so much! We want to thank Leah's pediatrician Dr. Hornyik for taking care of Leah, researching for us and fighting for us. Special thanks to Dr. Dawson for researching the Ketogenic diet for us. One more special thanks to Becca Leah's Occupational Therapist, thanks Becca for taking care of Leah and inspiring me each week.

We began a new life for Leah tomorrow March 6th, she will start the Ketogenic Diet (a treatment for epilepsy). She will be in the hospital for 4-5 days. We started this blog to keep everyone updated on Leah's condition. We will try to post everyday.