Sunday, March 7, 2010

Overdue Update

Things are going pretty good. Lizzie had a good day yesterday, although she was really lethargic. We ended up getting a cat scan yesterday and it showed that she still has fluid built up on the right side of her brain. Her drain is working, but she still has the buildup, so tomorrow they will likely do another surgery to put a permanent shunt in to help with draining fluid from the brain into one of her arteries likely into the heart for the body to handle the fluid.

They had talked about doing a surgery today, and even had one scheduled to remove some of the fluid, but she is doing pretty well. We had ANOTHER cat scan today that basically showed the same thing as yesterday. I think she'll have one more tomorrow before the shunt. Thank goodness our insurance deductible has been met a long time ago(two weeks seems like a long time in our circumstances).

Last night my Sister Rachael, and her husband Casey came to visit. We had such a nice visit and Lizzie was smiling and laughing a lot. It was really fun to see. Carol went home yesterday afternoon for her second night at home with the kids since this whole thing started. She is at church with them now and I hope she has had a nice, much needed break.

Lizzie has been getting up to go potty now and it is good for her to get up and around. She has been taking a lot of steps on her own and I think is making some progress. She has been able to keep her body straight without assistance when going potty and she couldn't do that last night. As Carol mentioned in our last post, our Doctor thinks she may have had a stroke a week ago on Saturday. Her left side of her face is still droopy and we hope that will come back.

Another piece of good news is that they backed off of some of her sleep medication last night and she still slept and has been more alert today. She still is on a ton of medication, but it is nice to get one out of her system.

They have a small church service here on Sundays, it is only about 1/2 hour and she wants to go with me today. I am excited for that and hope she does well in her wheelchair. They will also come in and do a primary lesson for her after church.

Overall, we still have a lot that we know we need to go through. First and foremost we are hoping her surgery goes well tomorrow. We are happy with her progress lately, but it feels like a lot of 2 steps forward 2 steps back. I didn't think we would be here this long, and we are likely going to be here another 2 weeks I would guess. I would be lying if I didn't say that recently it has started to wear on us a little bit. But Carol and I were both able to go home this weekend and spend time with our other children and that has been really nice for us. We also still have so much love and support from our family and friends and that helps to buoy us up. We hope that Lizzie continues to progress, as she does we'll be able to come home a little more often. Please continue to pray with us that she can make progress. We are so thankful for all of the kind things that have been said and done in our behalf.

I think it is important for everyone to know that Lizzie is happy and is really not in a lot of pain. Thanks again for everything. Here's to a successful surgery tomorrow!

13 comments:

Karen said...

We check this blog first thing every morning, last night at night, and everytime we walk back in the door! We are so anxious to hear of your progress and are thrilled that Lizzie is having such positive things happen. It was so great to have Carol at church today (except for my tear ducts) she brought such a spirit and shared her heart and soul! I feel so "filled" by you guys and your example and testimony! Our thoughts, prayers, and fasting continues to be in your behalf. Good luck tomorrow! We love ya!
The Gardiners

Shelley Hansen said...

I am glad tht she is doing better. I hope that they are able to get the fluid regulated soon! I will keep up the prayers. :)

Anonymous said...

It was so nice to see carol and the other kids at church today, Carol shared a testimony that was so strong and beautiful. We love you all and hope that tomorrow goes as planned.
you are in our hearts and prayers,
Love the Rallison's

Anonymous said...

We just want you to both know that Shane, myself, Mykol, KaitLynn and Leah all fasted for Lizzie today with the prayers and faith that she can recover quickly so that she could return home to your family. As always, you are in our thoughts and prayers and we are always here for you. Love you guys!
The Munns and Hancocks

Unknown said...

You're in our prayers still. Let us know if there is anything we can do for you guys!

Rachael Cook said...

I LOVED so much the visit we had with lizzie last night. He sweet smiles and giggles made my whole day. Her sweet little spirit is so strong and what a great example she is to me. I love her so so much. I love seeing you take care of her with so much love, caring, and concern. You are such an amazing Father. You say so much that you are blessed by other people and strengthened by the love and support from others, but i can truly tell you that i have been strengthened by you, watching you, and your strength as a Father and a Brother. I love you tons...and Carol too. what an AMAZING mother she is.. Lizzie truly has the best support. I can't wait to visit soon. I love you guys!

Gottfredson's said...

Again, great to read your blogs and grateful that Lizzie is progressing not as fast as you had hoped but she is. Great message from your brother, Ben. What a testimony that the both of you are sharing with us every day. You write beautiful messages - the both of you. Wish that we were in our old ward to have heard Carol's testimony. Our prayers and faith are with you. The Lord's will will be done and He has a plan for you and for Lizzie. God bless you always. Love, Lynn & Cheryl

alligood said...

I just finished reading your blog from the time Lizzie was diagnosed. What a roller coaster! It makes me physically ill when I think about that time in our own lives. You are handling things with such humor and faith and grace. Good job! Hopefully the shunt placement will go very well tomorrow and Lizzie can start making more strides towards home. It was nice meeting you on Thursday. Please feel free to contact me at any time!
-Allison :)
(Mom to Matt)
www.lifewithlittleboys.blogspot.com

alligood said...

P.S. I linked your blog to the sidebar of mine under 'the strongest children you will ever meet'. I hope that's okay! Let me know if you want me to remove it! :)

Hallie said...

Ben and Carol, I'm not sure if you remember us. But, we sure remember you. This is Duane and Hallie Richards from the Terrace.(the 7th ward). How we have thought about the both of you over the years. You are both such amazing people, that made an impression on our lives. So much has changed for our family.I know you would be proud of us. My heart is heavy hearing the news of your little one. Your sweet family will remain in our prayers.Be strong as I know you are and thank you for being so kind to us. Take care.

donette julian said...

Carol, I have to say...when you walked into the Primary room today I was overcome by emotion!! The minute you walked in...I could feel your LOVE that you have for each of the children. We have ALL missed your presence and your BEAUTIFUL spirit soooo much! Your blogs are incrediably inspring and FULL of FAITH. What a AWESOME surprise to be able to see you and hug you and share our love with you. Sure ENJOYED your BEAUTIFUL heart felt testimony today. That's exciting news Lizzie is able to do somethings on her own now...YEA!!We are fasting (Abbie fasted for her 2nd time today and her 2 fish fasted too...lol)!! and praying for a very successful surgery for lil' Lizzie tomorrow. :)

LOVE & HUGS,
The Julian Family

Anonymous said...

Our family continues to fast and pray for Lizzie and your family. We check your blog often to check for updates. We hope everything goes well tomorrow with the surgery and that sweet Lizzie will continue to move foward.
Love Kristine Potokar & Family

Anonymous said...

We have been thinking of you so much. We want you to know we love you so much and you are in our prayers throughout the day. We feel so bad we don't live closer to help out and support you. Please know we love you.

Josh, Mercedes, Annika, and Sam