Leah has had some good days this week. There were a couple days where she had no seizures. She then cried to eat and moved her arms and legs, I could tell she wanted to smile a couple times. These were awesome days. I love these days but they are also very emotional for me (they play with my mind). It's hard to see her come and go. Although I do treasure these days!

She is getting her permanent feeding tube next Tuesday March 5th. It is a surgical procedure and she will be put under. We are very nervous about how she will respond to the anesthetic. As you all know she has awful reactions to many medications. We will be talking to the Anesthesiologist about her and what anesthetic is best for her. She will be up at PCMC for a couple days. We would love lots of prayers for her that day.

Ty put his favorite stuffed animal next to Leah while she was sleeping...so sweet!

Leah's stander. She is put in this three times a day for 10-15 mins. It helps her bones by putting pressure on them.

Her therapist brought this special toy. When she touches the beads it plays "It's a small world". 

Love it!!!

Acceptance!

The year 2012 is a year I would like to forget. It was full of sadness, anger and grief. The grieving stages are miserable. I would go from denial to sadness to anger to a little acceptance and then a week or two later I start the process all over again. It was so exhausting. I didn't know how to cope because we didn't know Leah's diagnosis. My brain didn't know what to do. I sat on my couch holding Leah waiting for a diagnosis to come or waiting for Leah to pull out of her sickness every...single...day. I had many many very ugly break downs that I wish my husband didn't witness. Thankfully my kids didn't  ever witness them (I made sure of that). I would definitely say I was in depression. I tried a few medications but my body doesn't like those meds. I get all the side effects so therefore it's not worth taking them. My energy level was completely gone. I was lucky if I got showered and dressed for the day. My eating habits turned to not eating at all or over eating the wrong foods. My weight is far from where I would like it. My family lost me for over a year.  Many people carried me through the year 2012 and I thank each and everyone of you.


As I have said I look forward to a beautiful 2013. The only person that can make 2013 a wonderful year is me. I am in charge of how I will respond to what's been given to me.

I accept my new life! I accept that I am a mother of a special needs child. It's going to be a challenge every single day. I accept the challenge! I am strong and I can do it! Instead of "why me?" I say "why not me!" I am the mother for her! I cry when I think about that because she is so amazingly strong so therefore I have to be strong just like her.

I am changing me! I am now waking up to happiness! It feels so good. My new "daily medication" is Yoga, running and strength training. I am taking care of me! Taking care of me is just as important as taking care of her. If I take care of me I am better at taking care of her, as mothers I don't know why we have such a hard time at taking care of ourselves. I am also going on a 12 week "Live the Life" program and a "Feel great in 8" healthy life program with some friends. I am so excited to "loose the baby weight" and get back into healthy living habits. Wish me luck!


I look forward to 2013. It's okay if Leah doesn't get a diagnosis! I did the best I could for Leah and I will continue to do my best...forever! I accept that this is Leah's life. This is the body that God gave her, it is broken but her spirit is very much so alive! I will feed her spirit with positive goodness everyday.

When I let the anger and sadness go and I finally came to this acceptance, beautiful things have happened around me. God was always there, He understood what I was going through and he anxiously waited for me to get to this point of acceptance.  He wanted me to find this happiness and acceptance on my own. He wanted me to learn and grow on my own, just like a loving Father would do. I love him and I am thankful He trusts me with Leah.

Pluggin' along!

Life is pluggin' along! I haven't been able to blog as much as I would like because Chad travels a lot in January. He had a great time at the Big Sky Montana Dermatology conference. He looks forward to this conference every year. Basically he has meetings for three hours of the day and then he gets to snowboard most of the day. He had knee surgery about six weeks ago and the doctor said he could snowboard as long as it was powder. Lucky him the snow was awesome and his knee held up. I am so happy he got to go have some fun. Life is hard at home so it's so nice to get away from the stress and enjoy life. That's what keeps us sane.

Leah has had a pretty good couple of weeks. She has had some days with seizures and some without. We celebrate the seizure free days. She has been crying these past few weeks. We love it, but she doesn't have any coping skills so that makes for some long crying sessions. We went to get her upper GI track looked at this past week. The radiologist said everything looked good. He said she is having some reflex but it probably won't be a problem. We are waiting to hear from Dr. Jackson (GI doctor) to see when he will be putting in her G-tube.

She is handling the ketogenic diet well so far. Here's a picture of everything it takes to make her special diet. 

Here's Leah sportin' a pebbles look, she is starting to get more hair.

A good week!

Ty put this hat on Leah and he snuggles up to her cheek and says "mom take a picture". She looks like she is smiling but she was actually kind of gaging. But let's just pretend it's a smile.

It's been a good week. Leah hasn't had a seizure for four days now. YAY!!! She cried all day on Wednesday, it was a beautiful sound. We were all laughing at her crying it was a great moment. We look forward to more crying days.

We will be taking her up to PCMC on Tuesday to have her upper GI track looked at to make sure everything looks good to put in a G tube soon (feeding tube through her stomach). If everything looks good then it's just an outpatient scope procedure.

We are so thankful for all the wonderful people in our life that has helped us these past few weeks. Our new neighbors have been wonderful. They barely know us and they are bringing over countless meals and wanting to help.  We love the visits, encouraging text messages and phone calls from family and friends. It means so much to us to know so many people care. I told my friend the other day that we are emotionally doing better than I ever thought. She said it's because you have so many people praying for you. Thank you again for all the prayers.

A special thanks to Chad's co-workers (They don't live in Utah) for having MANY meals sent to our home. What a wonderful surprise, you guys brought me to tears when I found this out. Thank you for your kindness and generosity.

Our parents are now spending a lot of time in our home doing dishes, moping floors, making dinners etc. I am so humbled! We are so grateful for them helping make our life a little easier. We love you!

She is home!

Leah is finally home! Ten days in the hospital is misery! Leah doesn't do well in the hospital, really no one likes the hospital. I seriously don't ever want to step into that hospital again. Yes, PCMC has killer salads and the best diet coke but really how long can one live on that. My friends brought us some yummy homemade dinners throughout the week that really hit the spot.

A home nurse meet us here when Leah got home and set up her feeding machine. She taught us how to use it.  It's so easy and portable. Our life is already easier because we don't have to worry about her feedings. It took Leah a couple days to get use to having the tube down her throat. I also had to learn how to replace her tube if it comes out and it also has to be changed every month. So to learn how I had to stick a tube down a nurses nose to her stomach. I told her she is crazy for having me do this to her. She said I'd rather have you practice on me rather than your baby. I thought that was very nice. So I got really brave and I did it. It really wasn't too bad.

Here's Leah with her feeding tube chillin' at home. She is looking very sleepy!

Our next step is to just she how she does on the diet. Her seizures have decreased, which is great! We are talking about moving on to other hospitals outside of PCMC. Ones that are specialized with kids like Leah. PCMC is good but not great. They are very behind. So we will start investigating.

It's so nice to have her home again. I love when my family is all together. We celebrated her home with some awesome mexican food (we all love mexican food) and a night home all together watching a movie with tons of candy and popcorn (thanks Marshalls for the movie and treats). It's also so nice to have our stress level lowered. We are so much more relaxed with her at home with us. I can't wait to sit down this afternoon with the whole family together watching some football by the fire with a big diet coke and some chips and salsa. Now that's what I call happiness!!!

Day 9 in the hospital

Leah is still in the hospital. They did the blood work for the genetic testing. They did the swallow test yesterday and she was aspirating during the feeding so she can't drink a bottle. So we begin the life of a feeding tube. She has a nasal gastric tube right now (the one through her nose). We are getting trained on how to use it. It's going to take so much stress off us. We were constantly stressed when we were feeding her a bottle.

Life with a baby in the hospital is very hard. Juggling three kids at home and traveling back and forth from the hospital stinks. But some how we manage to do it, that is with the help of family and friends. Chad got on a plane again this morning. I know it was so hard for him to leave us with Leah in the hospital. He is an amazing husband and dad. He won't let me sleep up at the hospital. He has stayed every night with Leah. Her monitors go off constantly and the nurses come in the room constantly it's so hard to sleep. I think it's caught up with him. I think he is going to enjoy catching up on his sleep at his hotel. The reason Leah is still in the hospital is because they are monitoring her while she starts on the diet. So far so good. We hope to bring her home tomorrow.

Here is Leah in ICU:

Here she is today:

A friend sent me this quote, I really like it:

"God didn't promise days without pain, laughter without sorrow, or sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way. If God brings you to it, He will bring you through it."

Leah update

Last Thursday morning I watched a miracle happen. It was 3:00 in the morning and Leah was at her worst. She was seizing over and over and her breathing was getting worse. Right when the doctors were getting ready to put her on a breathing machine, she all of a sudden completely stopped seizing and her breathing got better. I witnessed a miracle.

Another miracle I have witnessed is how we were inspired last year to put Leah on the ketogenic diet and today she is back on the ketogenic diet. Yes, she is back on the diet. First time she got on it I had to fight and fight Dr. Morita to put Leah on the diet and now last Friday Dr. Morita walked into ICU and looked me in the eyes and said "let's put Leah back on the diet". I couldn't believe my ears. The doctor that wouldn't put her on the diet is now telling me to put her on the diet, I was blown away. There was a reason we were inspired to put her on the diet. God knows what's best for Leah!

So we are back on the diet. She is now receiving it through a feeding tube. We are thrilled!!! Yes, Leah's body at times had a hard time on the diet. They are investigating why she had such high levels of calcium on the diet. An endocrinologist is doing some blood work on that and also looking into why she got her fractures. Neurology is also having some more genetic testing done. I thought we have exhausted all genetic testing but apparently not. She is also having a swallow test done to see if it's safe for her to drink a bottle.

Honestly, we are holding up well. We have been through the worst hell of our lives this past year. We can seriously handle anything. We are exhausted and we really want Leah home and we do want our life to continue. This is harder on our kids than it is for me and Chad, they want life back to normal. But overall they have been amazing kids. I told my kids we will take them on a big vacation when things settle. I also told them that they are stronger people because of this challenge and that if they can get through this challenge they can handle anything in life. They said "yeah mom and now we can help other people through their challenges". That comment made me so proud of them!

Leah is on an uphill for now. I am so grateful for all the prayers in her behalf. The prognosis is probably not good for Leah. We still don't know what's wrong but the doctors say the outcome will probably not be good. We are going to give her the best life possible until that day comes. The ketogenic diet gave her the best life. The doctors know that the diet worked for Leah and they saw her come back to us when she was on the diet. Medications don't work for Leah, who knows why.

So we continue on...with our chin up! Life has been hard but we can feel the love and prayers from all of you. Thank you so much!