A sweet moment!

This happened yesterday March 19th:

Leah had a great weekend. She went three days with no seizures. She started crying again and moving. We loved every minute of it. She also stopped her diet on Friday. We anticipated lots of seizures and we were warned by doctors that when her diet stopped she would experience a lot of seizures but instead she had a wonderful couple of days. Then it hit and it hit hard last night when her body finally went out of ketosis. She was having seizure after seizure. Bad screaming seizures all night long. It was horrible. I went to bed totally upset and Chad was in Montana for work. When I went to get her in the morning she wasn't breathing well and her eyes were rolled up into her head and she wasn't responding (This is not usual for Leah, she has never looked like this before). I went into a full panic, I thought she was dying at that moment.  I decided to give her one more minute before calling 911. I prayed and prayed and told her to hang on. Then after a minute her breathing slowly got better and her eyes started getting back to normal. How MANY lives does this little girl have? I went and gave her a warm bath and just cried. I cried out to God saying...why? Why does this have to continue with this little girl? I can't take it anymore, she can't take it anymore. This needs to stop! I was feeling a little frustrated with God. I got her out of the tub and I started dressing her. I noticed her skin didn't look so pale and her eyes were focusing. I picked her up and held her up to my face and noticed she was completely engaged with me. I said "Hi Leah" and the corners of her mouth went up. I was in complete shock. I was thinking "Did that just happen?" Then Tyler yelled "Mom, Leah just smiled."I thought "Oh my gosh that wasn't my imagination, that really happened."She continued to be engaged with all of us the whole day. Her skin coloring was awesome all day and she had lots of emotions on her face (I haven't seen this since last Summer).  I saw my baby today! Just when everything came crashing down and I couldn't pull myself up. God stepped in. This was a tender mercy moment He gave me to lift me up and help me continue to fight the battle. Another beautiful moment I will never forget!

The next step!

Leah is doing really well, she is back to herself. She struggled with pain for about four days after surgery, she also had many many seizures daily for about four days. It seems that's how her body is when it experiences changes until it adjusts back to normal.

This is her G-tube. I think it's a lot more comfortable than the NG-tube. Her therapists say that Leah has recovered remarkably well compared to other kids with G-tubes. I know it's because of all the prayers. Thank you again to everyone who prayed for her that week of her surgery. That week went so well for her (besides the seizures).

The ultrasound of her kidney's revealed that her kidney's have a lot of calcium build up and some kidney stones. This is not good news. The nephrologist suggests she should come off the ketogenic diet. We met with Dr. Filloux (her neurologist) and he confirmed that it's a good idea to come off the diet because of her kidneys and because we are not seeing the results from the diet that we saw last Summer. Her seizures haven't improved from the diet and we haven't seen any developmental change. So, we are officially going off the diet this week. I do feel let down. I feel sad that the diet didn't work this time, I had my hopes up for a different outcome. I had hope that we would see her again like we did almost a year ago. I miss her so much. I want to share an experience I had a couple Monday's ago (the day before her surgery). Leah was having a really good day that day. She was very different. I can honestly say I saw "Leah" that day.  A window opened that day..it was beautiful! I don't know why out of the blue a window opens. I truly feel God blessed us with that moment to get us through the hard days. I will never forget the way she looked that day!

She also got an MRI. The results are that her brain looks fine but it doesn't have the growth it should at her age but she also is very small for her age. Dr. Filloux is more concerned about her development at this point rather than her seizures. Most children with seizure disorders still develop. Why isn't she developing is the big question. He is calling to see if the test results have come back from all the genetic testing they did back in January. He is also having one more test done and then from that point we might be handing Leah over to another hospital. The hospital he suggests is the Mayo Clinic in Rochester,  New York. It will probably be a few months before we officially make that decision.  It will also probably take awhile to be accepted by the hospital. We are ready for a new set of doctors to take a look at this mystery girl. I know it will all work out if it's meant to be that we go there.

We got great news last week! Leah will be getting a medical stroller and car seat. The stroller itself is $4,000. Shocker right?  But it's awesome and its specially made for her. The wonderful part of this is that our insurance is covering the whole thing. Such an incredible blessing! Here's a picture of it:

Leah looks so cute without her NG-tube! She seems to really like this Minnie Mouse stuffed animal.

Surgery went well!

As many of you know we were so nervous about Leah's surgery. She doesn't respond to medication well so we were nervous she would have a reaction to the anesthetic. Her Anesthesiologist was awesome, she spend time talking with us about all our concerns. Chad and I felt good about it and I then handed Leah over to her and I cried as I walked to the waiting room. The surgery was only an hour and then they came and got me. She looked great and came out of the anesthetic very well. No seizures or anything. Her vitals were great and she was then transferred to the Neuro drama unit (our 2nd home) it's really sad when we know all the nurses on the floor. They greeted Leah with a welcome back I looked at them like we really wish we weren't here. She did really well a few hours after surgery. Then about four hours later she started to really cry, a very painful cry. We were so surprised to hear such a strong sad cry. The nurse gave her Tylenol and she continued to really wail. About 30 mins later we decided it was morphine time. She stopped crying immediately. Thank goodness for morphine! She rested well the rest of the night. Chad stayed the night with her and then I will go up in the morning.

They will be watching her over night to make sure she is handling the new feeding tube okay and then they are doing an ultrasound on her kidneys tomorrow to make sure they are holding up okay. Then she should be coming home sometime tomorrow. She is also getting an MRI next Monday.

Thank you everyone for all the prayers. We are so grateful everything went well today!

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.