Appointment with Dr. Longo

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

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

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

We will keep fighting the battle!

Leah at the pumpkin patch

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

Here's some pics:

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

Video of Leah's awesome day!

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

Here's a cute pic of her!

Yesterday Tyler said to me:

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

That kid amazes me!

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

Video of Leah holding her head up!

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

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

Here's another great quote:

GI doctor appointment

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

What an awesome day today!

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