Elisabeth was admitted to Sacred Heart Childrens Hospital today. An EEG done earlier confirmed that she is suffering from Infantile Spasms. She will be undergoing ACTH therapy to (hopefully) resolve this problem. Her first treatment was just given to her a few minutes ago. We'll see how she reacts.....the side effects are supposed to be pretty severe.
We still felt that this was the best option. If we chose not to go ahead with the therapy it could cause serious developmental problems. Not only would she stop progressing, but chances are that she would backtrack on the milestones that she has already hit. As the doctor put it, each of her milestones has been hard earned and it would be sad to see her lose that. Her neurologist actually showed me the print out of the EEG. After each spasm her brain literally shuts off and there is no activity for 3 seconds. This is not a good things when she has spasms continually for 3 to 5 minutes.
The hospital has been very accommodating. I get to stay with Elisabeth in her room. There is a bed for me as well as a private bathroom and shower. There is also a family room just down the hall with a refrigerator, microwave, and computer (so I can post these updates).
The ACTH therapy will continue for 2 weeks. If she reacts OK to it they will let me take her home in a few days and a nurse will come to our home twice daily to finish her treatments.
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Take care. You are doing the best possible thing for little Elisabeth, she is in our prayers, as is your whole family.
I'm going to look up that treatment, I'm interested to know how it works.
Get some rest and give that sweet baby lots of love...let us do the praying and worrying.
we will say lots of prayers for you guys. if you need any help with your big girls, i lead a very boring life these days, and my kids would love to play. let us know if we can do ANYTHING.
you sorenson ladies are quite strong... think of how much elisabeth has faced already! more than i have in my entire life.. she'll be just fine i'm sure. she amazes me lisa. and so do you and donald. if i can do anything let me know. i'll be out of town this weekend, but if you have to stay longer i can help out wherever you need me. love you so so much. give elisabeth hugs and kisses for me. take care lisa, and keep us posted because i'm going to be clinging to your blog all weekend!
Dear Lisa,
I have been following your blog since a friend suggested I start a blog. When I stumbled on yours my heart connected. My Elisabeth is now 22. She was born with spina bifida and hydrocephalus. My heart goes out to you as you endure the hospital stays and balance family and your daughters needs. We are keeping you and yours in our prayers. You have such a spirtually mature attitude you are a strength to even those who do not know you personally. When my Elisabeth was born she was the my fourth child. My other children were 6, 4 and 2. In an answer to prayer a member of the stake presidency told me that someday I would have a spirutal understanding of my Elisabeth disability. That is when for me my heart was healed. May you continue to be blessed with peace and courage. Sincerely
Stephanie
Hope you got some rest and feel strength today. Thoughts and hugs...
You are in my prayers. I wish I was close and could come visit and jusy give you a big hug. ((hugs)) But hopefully what you do get will help. I am praying for Elisabeth.
Praying for energy and peace for you and Donald. And for Elisabeth to respond quickly and perfectly to the treatment.
Thank you for the updates. We will keep you all in our prayers.
Lisa,
We're praying for you here in Nebraska. Wanted you to know we think about you every day!
Jill
Lisa~I am still praying continually for you all, espcecially Elisabeth. We will be home Sunday night... if you are still in Spokane, I will come and sit with you a bit at the hospital. But, I pray that you and Elisabeth are home.
Thanks for updating us, as many are very concerned. You all are definitely loved and we'll keep praying for you.
Lisa, I love you!!!!!! Your the best mommy ever:) It will be ok...you always make it that way...She is a trooper..You know I am here for you anytime anyhour. Know my number 2.....Love you and courtney and I will be checking the blog when we are gone this weekend..
*hugs* *hugs* and more *hugs*
Dear Lisa,
I'm not sure how I found your blog. I'm so sad to hear your sweet Elisabeth is having the spasms. I will put Elisabeth and your family in my prayers.
My son has Hydrocephauls and Chiari Malformation. I don't know what it's like to be in your shoes. But sometimes I feel like they could be the same pair.
All the best to you all during this time.
I'm so glad you keep up with your blog. I feel like I know little Elisabeth so well, yet I've never even seen her in person. She is such a strong, little girl and it breaks my heart that someone so small & precious would have to go through so much. I pray for her and your family and hope that the doctors can do what's best for her little body. I think of you and Miss Elisabeth often. Jennifer
Thinking of you and keeping you all in my prayers.
We're hoping and praying that she's responding well to the treatments. You're in the best care there in Spokane. Hopefully you'll be home in a few days.
our thoughts and prayers are with you guys!!!if you need anything let us know and we will be happy to help out anyway we can!!! love misty and brad
You're in my heart and my prayers. Faith, Hope, and Love- where would we be without it?
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