Savanna was discharged early Friday morning and we made it home by lunch time. It was so nice to be home, feeling like we were back in the driver’s seat again with her care. Savanna is doing better, but still has a long way to go in terms of recovery. She is in a lot of pain, and the best we have to manage the situation is ibuprofen and Tylenol.
The past few days have been rough trying to manage her pain. It comes and goes. We seem to get good moments all of a sudden, and then as quickly as it became good, it deteriorates into crying and fussiness. She has absolutely no interest in taking a bottle, so we are back to bolus feeds only (through her feeding tube). This is tricky when she is just agitated beyond consolation, and squirming like you would not believe.
I decided to make some adjustments to her medication to see if we could level out her mood without too much sedation. I split her onfi back to TID (tri-daily) versus morning/bedtime only. And I went ahead and started scheduling .5mg of ativan, TID. This has helped tremendously. She is much happier and playful, with a lot less ibuprofen. Once we get completely off the dexamethasone (steroid for her stridor), that will help this situation too.
She used to crawl by doing a bunny hop, versus alternating opposite leg/arm movements and now she is crawling like a normal baby. Albeit not much, but when you see it, it takes your breath away at first.
She is eating, like a horse. She is chewing well. Against normal intuition as a parent, dicing food into incredibly small pieces enables babies to simply swallow food versus chewing. One piece just the wrong way and she chokes or her gag reflex kicks in full force. So, the O/T (occupational therapist) we have recommended giving her larger pieces, so she would not naturally want to swallow the food, but rather naturally realize she has to chew it first. Even if she doesn’t swallow it at first, that’s okay, she is getting over the aversion to having food in her mouth. This has been a long process with Savanna. A process that honestly, we almost didn’t even notice with our other kids – that is how different they are from a developmental standpoint. It is all good.
One step at a time.
These guys are three pees in a pod. They are the best of brothers, and worst of enemies when it is time for ‘warfare’ – aka ‘playing wrestle’.
Tristan, Brandon and Austin are such good helpers. They love to do things for Savanna to help us. Most of the time, it is a good help. Sometimes, like when Brandon wants to spin Savanna on the sensory swing, things get a little out of control. I picture in my mind puke spraying out from Savanna splattering the walls all around her as she spins wildly…. and then… well, I slow down the swing of course. We have yet to see the puke, but I have to admit, she likes to spin.
They just crack me up with their antics and how Tristan (the oldest) can interact so well with Austin, (Savanna’s twin and the youngest). He is so protective and makes sure Brandon does not hit him too hard, or ‘wrestle’ him too hard. They drive me to my wits end, especially when Savanna is having a really difficult time. Then they turn right around and do things that are so touching and so thoughtful.
Sometimes, I have caught myself making parenting mistakes with Tristan (oops! did I say that out loud?) Yes. When my patience is the thinnest, I act my least thoughtful. I am so focused on something going on with Savanna, that I have said things in a voice that was not called for, but was heard. These situations are difficult.
Like seeing a picture you shouldn’t see…you can’t ‘unsee’ it. Once I hurt his feelings, it can take a long time for him to get over it no matter what I do or say.
In the beginning, he (Tristan) would ‘forgive’ (more like forget) pretty quickly, but not now. He is older and smarter. His feelings are genuinely hurt, and most times it goes into the next day.
I am learning as a parent and person in this situation. It is still a work in progress, but this ‘stay-at-home’ situation is far more difficult than I thought it would be when I signed up for it. With that, of course, goes the reward far beyond what I could ever achieve in any company, at any level.
Seeing Savanna learn and progress, knowing that I am big part of that effort, just can’t be explained in words. There are not words that I can put together to characterize the emotions involved, especially since this last surgery.
So, overall, Savanna is progressing and doing well. We are really anxious for the next few months to see what happens. We continue to learn as a family what it takes to care for someone like Savanna. More challenges are forthcoming. Just as I have said before, God is preparing us for the future with the situations of today.
A special thanks goes out to Grandpa Squiz, Grandma Lou, Mama Barbara, and McKenzie and Eric for being there when we really needed help. They allowed us to devote 100% of our time to Savanna during the operation and recovery period in the hospital. Their help was a blessing.
Savanna's Journey 
Thanks,Kenny for keeping us all in the loop as Savanna’s journey continues. You all are in our thoughts and prayers daily.
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Hi Aunt Terry and family,
You are welcome. I actually enjoy keeping everyone informed about Savanna. And, I am really glad you like to follow along. She is doing pretty good right now, but still having some post operative pain. This will pass soon enough.
We really hope to see you all this summer,
-ken
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Congratulations on her progress so far. You two are amazing parents, and although parenting “normal” kids is extremely humbling, you guys are in for lessons of a lifetime! But the reward will be worth it. Your faith in God will definitely carry you through the worst of times. You were chosen by Him to care for one of his special babies, and I’m sure he is smiling at the love and antics that go on at your home!
We love you guys, and wish you and your family all the best,
Connie
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Hi Connie
Thanks for responding and following Savanna. We feel blessed. It is very easy to get caught up in the moment of daily life around our house. But, when I really think about what is going on, I realize just how blessed we are to be awarded the care of someone like Savanna. It has changed everything for us. It affects everything we do now. It affects all of our views with respect to special needs kids. Not that we were deliberately blind in the past, but we were blind nonetheless due to circumstance. Now, we are going to raise 3 typical kids alongside Savanna which will allow them a different view of life than they might otherwise have had. I think it is great, but definitely challenging!
We cherish the memories with your family.
Warm regards,
-ken
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OMG, the suffering that poor little girl, and her parents, have and are going through. Thank God you have angels (Ken’s mother and Rebecca’s parents) that have been able to be there for you and help through the hardest times. As always, our thoughts and prayers are with you. Let us know when we can supply the most help to all of you and we will jump in the car and get on down the road to Texas.
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Hi Dad and Sheila
We are doing okay. Savanna has had better days. But, we know all the activity know is transient and she is on the road to recovery. It was a long surgery and it is going to take some time for her to really come around. Teething never helps anything, especially for her. Incisors are coming through now, and it really suscks simply put.
Talk to you all soon,
-ken
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I am so happy (words just aren’t enough) that Savanna is home. I still pray for all of you that the surgery proves successful. Love you all! Connie
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From: Savanna Lininger’s Journey with Epilepsy Subject: [New post] Our baby is home…. To: wdiebold@bellsouth.net Date: Monday, April 8, 2013, 10:11 PM
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kenlininger posted: “Savanna was discharged early Friday morning and we made it home by lunch time. It was so nice to be home, feeling like we were back in the driver’s seat again with her care. Savanna is doing better, but still has a long way to go in terms of recovery. “
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Hi Connie,
We are taking everything day by day. Thanks for responding and following Savanna. Hope to see you this summer.
-ken
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I am so happy that she is back home! She looks so precious! I hope her pain has eased some since your post, one of the worst things ever is when your baby is hurt and not being able to take it completely away. You guys are amazing, I hope that recovery continues to go well for Savanna. I love seeing your updates on Savanna…she is such a strong little fighter!!! Continued prayers from our family to yours that the surgery was successful and that she continues her leaps through recovery (it is so remarkable to read that she is now crawling like she is!!)
The Barnes family
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Hi Marcie
I had read PJ’s story while we were in the waiting room recently with Savanna’s second surgery. I re-read it again tonight and I am just beside myself at what you went through to get to where you are now. I just wanted to tell you that I think you and your family are really strong and God chose you for PJ for a reason. And PJ, well, he is a miracle.
I used to thank God everyday for Savanna (and our other blessings), but now thank him for helping families like yours get through the difficult periods. I pray for strength for you and your family.
My 5 year old said something tonight that I have to share with you. When I was putting him to bed, after our normal routine of prayers, he said he wanted to say a special prayer for Savanna. (Sometimes I initiate this, but tonight it was all him,) He said, “God, I wish you would make Savanna all good, so she would never have to go to the Hospital again.” I thought about PJ, and prayed for the same for him.
-ken
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